Every body goes haywire.

Finally found the time to read Every body goes haywire by Anna Altman. A friend had shared it with me months ago.

Joanna Kempner, a sociologist at Rutgers and author of the recently published Not Tonight: Migraine and the Politics of Gender and Health, writes that “people worry when they cannot fulfill their end of the so-called sick role, an implicit social contract in which sick people are given leave of their everyday duties, as long as they adhere to certain rules like seeking appropriate medical care and working hard to get better. But these obligations are difficult to meet when there is no effective treatment.”

Ooooof. This has been a bit point for me the last two years. Getting it into my head, and accepting that I have a lifelong, chronic condition. There is no endpoint, other than the big endpoint.

THIS INHERITANCE AWAITS MANY WOMEN. Almost 20 percent of women suffer migraines, and 75 percent of migraine sufferers are women. That same group of hard-to-diagnose and hard-to-treat diseases—lupus, rheumatoid arthritis, and multiple sclerosis, but also chronic fatigue, chronic headache and fibromyalgia—primarily afflicts women. “Women are more likely than men to be disabled by chronic illnesses,” Susan Wendell writes, “and women (including women with other disabilities) suffer more ill health than men. Women live longer than men, but much of that extra living is done with a disabling chronic illness.”
...
Wendell points out that those chronic conditions bring with them the kind of invisible impairments that can cripple a patient without appearing notable. “Pain and/or fatigue are major sources of impairment in many chronic illnesses that are more common in women than in men,” she writes. It is exactly these impairments that are easiest to dismiss or misperceive as psychosomatic.
...
And doctors treat complaints about such conditions differently when they come from women. Kempner cites studies that show physicians prescribe less pain medicine to women than they do to men, even though women are more likely to suffer chronic pain. Other studies show that women are more likely than men to be prescribed antidepressants and tranquilizers—rather than pain medication—for their migraines. Add to this the fact that migraine is more likely to occur in people with mental health diagnoses like depression and anxiety, both of which are more common in women. All of this makes it hard to untangle migraine and other chronic pain conditions from stereotypes of female weakness and hysteria. The characterization perpetuates the notion of the migraineur-as-malingerer, the sensitive soul disabled by everyday disruptions.

I remember reading about hysteria in feminist health class and man did I not really get it at the time. It took an added decade of navigating the medical system for me to see it time and time again. I remember talking to my most normie friend N when she was on the verge of a burnout from her job. She was traveling internationally several times a year and was working over 60 hours a week. I told her, without mincing words that she should not wear makeup or dress up to go to the appointment (she usually would) because if she looks tired and beat, the doctor will be more likely to believe her. I also mentioned the study about how women often minimize their pain and discomfort out of the gendered habit of "I'm fine" -ing everything. I told her to psych herself up, and not play it off. This is a woman who is neurotically privileged and physically in peak condition.

This is hard to communicate when you appear to be young, healthy, and able-bodied. “To be recognized as disabled, we have to remind people frequently of our needs and limitations,” writes Wendell of women who suffer from chronic, invisible disabilities. The struggle for recognition is constant, even among the most compassionate: “Some people offer such acceptance readily, others greet every statement of limitation with skepticism, and most need to reminded from time to time.”

In my case, much of my close circle has these "invisible disabilities," chronic conditions that do not always display outwardly. There is something especially slippery about mental illness, something we're asked to describe at inopportune times, or when we aren't verbal or when we're feeling better, or when we're in such crisis we're catatonic.

I had my diagnosis immediately. Learning to cope with it takes years.
Illness is the space where I came to understand the limitations of my being. It’s a lesson we all learn but one I learned harshly and twice, first watching my mother and then enduring my own suffering. Now I know that I can lie down for hours without moving. I can meditate. I can stare at the wall and not despair. If I discovered something redemptive in this experience, it’s that capacity for stillness.

Heavy piece, but her closing paragraph really nailed it. There is a natural quiet that comes to you through solitude and suffering. I wish that didn't sound as poetic as it does. There's a resignation in it, an acceptance. But really, what choice do we have?

Every day.

This week at work I'm replacing the receptionist, who is on vacation. This means I don't have access to any of my marketing programs (the design stuff) and I'm mainly answering the phone and receiving mail.

This also means I have more "free time" - since the majority of my work day is me being at the reception, available.



I've been in a bit of a fog lately. My brain has been slow, and I'm just being, I guess.

I need to be more vigilant about the thoughts I feel warrant being put to paper/screen. I'm often lost in thought, but I don't take the time to write down a certain turn of phrase of idea. I let it go.

I get lost in myself a lot these days. I fall down a rabbit hole, wondering what and why.

I'm trying to live my life daily, and it's been difficult. The fact is, I may never get a decent job. Never have a good schedule or a comfortable salary. I will always struggle with my attention span, with my memory. I keep telling myself that a better job situation will change everything. And though it would, in allowing me certain lenience, it also couldn't.

I've got this terrible habit of putting my life on hold. It's deeply ingrained in me.

It's common among the fat, from what I hear. I'll go on a trip once I lose some weight. It'll be different once I lose some weight. I wouldn't feel this way, if I wasn't fat.

So there's that side of it, yes, but I think it's also a result of compartmentalizing how to get through life. It's difficult for me to think long-term because I find it painful. Parts of me, the parts of me that staggered into adulthood did so through just letting time pass. I got by. I took things one step at a time, and then I was 30. I tried to access help and support and some bits worked and some did not. And over time I met some people and learned a certain kind of language and some basic skills and I got enough in me to continue to get by.

And yes, part of my life will always be about getting by. But on good days, I'll have the chance for things to be about more than that.

Right now, these days, my struggle is work. It's what to do, and where, and for how much. A work-life is 40 hours of your week. It's significant and I'm struggling with what I should be doing.

Right now I'm working a 37.5 work week as a "marketing assistant." I was hired as a graphic designer and through a series of colleague lay-offs and quits, I'm taking on administrative work and grossly under-used and under-stimulated. I am not doing any creative work.

These days, I am contented at finding a job that's stable, and leaving the creative work to my evenings and weekends. It'll be Etsy and writing, as long as I have a 9 to 5 that can pay for me to live my life.



I'm not doing that right now. I feel stunted by living with my mother, paying my half-rent and saving up while I can. The saving is eternal. Coins meant to fill a jug. The rattling of it all, a drop in a bucket.

It's long. Saving. Working. Working on myself. None of it has been quick or easy. So in the meantime, what I have is this meantime. It's the everyday. So if all I have are these days, then all I have are the choices I make within these days.

What is it that I spend my time doing?

Who are the people I make a point of seeing?

It's part of why I started volunteering at the dog shelter / animal refuge. If volunteering is part of my values, I need to live that, or else it isn't a value of mine, it's just something I talk about.

And if that principal can be applied to all things - what should I be spending my days doing?

How do I extend that practice? The practice of living my values.



I feel successful with the volunteer work. And I feel successful when I am able to prioritize and accomplish things for myself. Yesterday I did some meal prep. I made healthy lunches, and I made a healthy vegetarian lasagna. It's taking care of myself. It's helpful. I know what I'm eating. I'm eating in line with my values (vegetarian, clean) and I feel pro-active in regards to my health.

There's always a shadow of guilt though. Of not doing enough. And it's difficult to rid myself of that impulse.

I know my next challenge is a physical one. I know physical activity and exercise are my next steps. My goal is to become more physical. To stretch. To work my heart. To be able to purge certain kinds of energy and to sweat out toxins. To court the calm that comes with exhaustion. Something I haven't felt in a very long time.

It's difficult. The every day. How is it a moment can seem so eternally long, and yet so painfully short? How is it my mind can wander so much? How can I truly harness the powers of my faulty brain. Some parts don't work all that great, but surely, some do. Maybe ability to concentrate isn't great, but my empathy is strong. My sensitivity is strong. My dreams are wild. What does that make of me and my brain? Of my potential?

I find myself rooted by the knowledge that there is such a thing as neuroplasticity, and that there is such science that says trauma and habit form pathways that become ingrained so that the brain becomes incapable of taking other paths. These are things I can logically know. But then what? How do I apply this knowledge to my life?



So the times that I remember things I don't want to remember, and they call up in me feelings of shame and guilt, or rejection or embarrassment, how do I respond in a way that challenges those set pathways, those painful roads.

How can a decade of self-harm be quelled?

That's where I am right now. I'm in the every day of it. I find it hazy with familiarity. It seems redundant. Here. Again. Always. It's always the struggle of being here, now.

It's difficult to follow my thoughts when things are muddled, and it's harder to focus when that muscle has atrophied.

Sometimes it seems so easy. Just keep it simple. Minimize. Breathe. Sleep. Take it easy.

Other times, I am astonished it isn't more common for a person to lose their fucking minds.



I think we do. I think we lose is periodically and in moments and then a sensation or familiarity brings us back to wherever it is we are and we're distracted from that insanity. It's the familiar that comforts us, even if that known thing is objectively sick in itself.

Is all this neurosis based in the apathy of privilege? Of access? Of excess?

I make these lists of things I should be doing to be okay. Is that a trap? I'm not okay, and it's my fault. Is anybody okay? Surely, some must be. Or else how would the world work? How would it keep going? There are investments made by those who are invested in it all.

I float too far from my own life.

Sometimes it's just so absurd. Then it's so simple, and beautiful and sweet. Then it hurts so much, my hair, my eyes, my bones. How is it I can feel everything and then feel nothing?

How can I live in this world?

How can I best imitate those who do?



This is my gobbledygook. It's nearly incessant.

All of today's GIFs by Jason Clarke.

On having my mother.

I was just reading an article on the amount of 20-30 something's moving back into their family home.

In an era of sky-high tuition and soaring housing costs, they argue the group known as Generation Screwed can help unscrew themselves by moving home to pay off debt.

I pay rent, but significantly less than I would on my own. Instead, I'm able to put large chunks of cash on paying off my debt. I'm 2,000$ away from that goal. Then, I'll be saving up, and be in a position to have a down-payment I could never have saved up while paying 800$+ on rent and living costs.

I'm grateful to my mom for not kicking me out when things were really rough for me. I'm also lucky that she and I get along well enough for this to be possible for me. Sure, sometimes she watches Ancient Alien Secrets Revealed and it drives me nuts, but other times she bring me her iPad so I can see a video of a baby goat playing with a puppy.

It can't be easy being the parent of someone who is suffering from unipolar depression. It's taken over a decade for me to get a handle on myself, and there were periods of my life where I was so despondent and miserable. I can't really imagine what that's like for her.

I've asked my mother about her mother, my Nana, and she's often expressed that she didn't feel especially loved or wanted by her mother. She kind of felt like her mother didn't want to be a mother. I've never felt that with my mom. First, she tried for four years to get pregnant with me. But mainly she was always present and loving and kind. I always felt loved by her.

We've had some tough moments. I remember overhearing her one night when I was in the depths of things, and I had just gained a lot of weight, she was expressing not being able to recognize me, and used the term "disgusted" in my weight gain. It hurt me tremendously. She was drunk, and talking to her best friend.

Maybe that added to the pile of shame I was already feeling.

Another time, while I was unemployed I decided to get my hair done. It ended up being lavender, and a little rock and roll. She freaked out. To her, it was an expression of "not giving a shit" and making it harder on myself to get a job. She has the same reaction when I get tattoos. The hair though, on top of being unemployed, burst a dam, and she screamed at me and cried. I ended up staying with a friend for a few days.

But, those examples are the exception.

I have much more in me about her rubbing my back while I was having a panic attack at 5 in the morning before a radio show interview. Or her presence throughout my childhood, at hot-dog days and bake sales.

I remember her tucking me in, and cuddling with me.

I remember my throw-up bucket when I was sick. lol.

I keep telling her not to do my laundry, but she keeps doing it.

Maybe the opposite of depression is a mother's love. A mother who loves being a mother. A mother cradling you in a warm, loving hug and rocking you back and forth. Real comfort.

You were wanted, and you're here, and they celebrate you.

I sometimes wish I had more siblings, so she could have other children to be proud of, and to gain from. She got kind of a dud with me.

I often feel a lot of guilt for being such a burden on her all these years. It's hard not to carry that with me. I'm going to try and look forward, and hope that the worst is behind me.

If all of this worked my empathy muscles, and my ability to relate and appreciate, maybe it'll make me a better daughter, as well as a better person to be around.

I'll never know what it is to feel that. I've only ever been on the receiving end of it. I've never wanted children, and though I can feel protective and maternal towards my nephews, or towards a baby, I do not have any desire to have one of my own.

When I see my friends going through it, I see the distinction between those having children and those who want them so badly, and get them. My friend C tried for years, and now that she has a newborn, I couldn't be happier for her. And no doubt, she'll live in the vein of motherhood lived in my by mother. Some people fit their vocations and passions so well, and I think for my mother that was motherhood.

She is not perfect. She is not a disciplinarian. There were times as a teenager when that's what I needed. But since my father died when I was 13, both she and I were left on our own. She married my father at 21. That's unimaginable to me. She was completely dependent on him. Also unimaginable to me.

As the fog of my depression lifts, I hope to continue to improve my relationship with her. I hope to remain grateful for her. I plan on spending as much time with her as I can. So much of my history is lost to me. There are so few memories. I want to enjoy my mother. I want to remember her, because she'll eventually leave me.

I'm grateful for her. And I can't even think about where I'd be without her.

I might not always be happy I was born, but I'm always happy she's my mother.

A Highly Sensitive Person; in graphs.

All from Buzzfeed.

The worries of a clear day.

Today isn't a bad day. Today is close to a good day. Work is quiet, so I'm able to doodle and write.

The last two evenings I've taken a walk after dinner. Maybe that helped. I get fresh air. I giggle at neighbourhood cats and walk-by dog friends. Maybe it helps clear my head. It’s a start.

Lately, all I can think about is money. It seems my financials aren't lining up as quickly as I would have liked them to. Though I have a small down payment now, it will take a few more months for me to get a better one. I guess moving out and getting my own place this fall is becoming less and less of a possibility.

According to my brother, years ago he signed up for some kind of special promotional credit card that put money away for later use as a down payment. He used some of it, but was limited in how much he could use, so there’s some left over money in that account. He told my mom he thought he could transfer that amount to me. My mother told me this. I said I wouldn't get my hopes up, but it’s hard not to. It would be nice to have a hand, no matter how little the sum. It seems to be a problem though, so I don’t think it’ll work out. I’d have preferred my mother not tell me about it.

It’s hard not to compare myself to the friends in my life who make more money, and who also have received financial help or gifts from their parents. Not all of them have, but most have.

I'm not making great money. I'm still living pay-check to pay-check. How can that be? Granted, I go out. I get manicures. I purchase clothing. But I work in a design office, I can’t give up entirely on my look. I have to look clean and presentable. I could be careful with my money. I could pinch a penny here and there.

I have few vices, food has always been an issue for me. First due to the eating disorder, and then transitionally, as a coping mechanism and soothing tool. Such fun. I get to think about it, daily for the rest of my life. Fun fun fun.

I'm really caught up thinking about whether I should just move out, to move out. To just start living my life. I could get something on the cheaper side / shittier end, and just fucking live my life. Alternatively, I think maybe it would be wiser to just wait, save up a bit more and then get something I really love.

I contacted the mortgage broker recommended by a real estate agent I spoke with. He’s with my bank, so I guess that’s handy. Who knows really. I don’t know shit about this stuff. I'm just trying my best to learn.

I'm just worried about ending up in a depressing space, feeling sorry for myself (for the rest of my god-damn life).

I'm also worried about over-committing myself financially, and having to deal with that anxiety. Especially since I have ongoing worries and stress about my having the ability to take care of myself. I like having an exit strategy. As time goes on, and responsibilities pile up, that becomes increasingly more difficult.

It’s a lot. I know it’s normal and even mundane for some regular members of society, but for me, it’s, well, it’s all on me

I guess the first step is seeing how much I can afford. The bank will let me know what they’d be comfortable lending me, and I have to think about what the means when it comes to what I can access and whether or not that’s too difficult to maintain.

The beautiful weather makes everything seem a lot sunnier than it usually is. That also worries me.