Songs for the Struggling Artist


The Change, the Phone Booth and a Sense of Doom

On my 40th birthday, I was struck with a sudden and horrifying sense of fatalism. I figured I’d over-absorbed the cultural preference for young women, that I’d over-attached my sense of self-worth to my youth, even though I thought I knew better. I figured that the reason I felt like I was turning 80 instead of 40 was because I’d skipped the mandated mother stage and just went straight from maiden to crone.

Then, recently, on a podcast, the guest mentioned that “a sense of impending doom” was a very common experience for women going through what used to be euphemistically called The Change.

Now – a lot of us have a sense of impending doom these days, what with the political landscape looking like it’s auditioning for a post-apocalyptic B movie, but my sense of impending doom hit even before the actual impending doom. So I suspect it’s partly the hormones shifting in a changing body.

About two years ago, out of the blue, I began to get headaches. Weird ones. According to the docs – it’s migraines. And they have been debilitating, disabling and pretty much took over the last two years of my life. I saw four different neurologists and headache specialists. Not one of them suggested that this sudden late onset of chronic migraine might be a result of perimenopause. Not one. It took the mother of a friend telling me about her migraines ending after menopause and suggesting mine could be the start of that for me to put the possible pieces together. Do I know for sure that this migraine situation is perimenopause? Nope. That’s not really a thing that’s knowable.

You know why? Because despite the fact that every (cis) woman who lives long enough will go through it, there’s no real medical conversation about it. Despite the fact that there are very real, very serious, very debilitating experiences for many women in the middle of that transformation, no one seems to be addressing it. So many women my age and older have been struggling all on their own with this or that symptom, while there may be a common explanation for our pain or our sense of doom or discomfort.

Perimenopause is the process that leads to menopause – menopause being the definitive end of the menstrual cycle. And of course, this kind of reverse puberty, is a perfectly natural organic process. But just because it’s natural and organic, doesn’t mean there won’t be trouble and that we shouldn’t understand what’s happening. Childbirth is also perfectly natural and organic but that doesn’t mean we shouldn’t understand all of its phases and aspects. Just because something is natural, doesn’t mean there won’t be trouble.

And I have run into trouble. Many of my friends have also run into trouble. And I find myself pretty furious about how little the medical establishment has to say about it.

In this same time period, my doctor insisted on my getting a mammogram. Just because I am 44 and now’s the time when they give them. There’s quite a bit of controversy about the efficacy of all this breast screening – quite a few people have suggested that it may do more harm than good. There’s no history of breast cancer in my family and there was no reason to suspect anything wrong but my gynecologist said she couldn’t give me the medication that might help with the hormone migraine situation without one.

So, there I was in a women’s imaging center, getting my boobs squished in a machine and then called back the next day to have them squished another way because of “asymmetries” and then be sonogrammed and pushed around with a sonogram wand and after all that stress, it turned out my breasts were fine. As we thought.

So here I am, having a completely unnecessary set of procedures that are uncomfortable, stressful, anxiety producing and time consuming – while the thing that is actually wrong, that is actually causing chaos in my body, goes completely unaddressed.

And sisters, I got really fucking pissed about it. I suddenly felt like – oh, this goddamn medicalized world is like a Hollywood adolescent boy – obsessed with boobs and vaginas (-we’ve been pried open by speculums from an early age-) but not particularly concerned with what is actually going on inside the person. The fact that we have this insane assemblyline for mammography and no understanding or plan for perimenopause is ridiculous. Yes – breast cancer screening is important. I get it. But not every woman gets breast cancer (gratefully!) And almost EVERY SINGLE (cis) woman will go through perimenopause. That’s half the adult population.

And before it (maybe) kicked in for me, I knew next to nothing about it. And I’m a pretty reasonably informed woman.

I knew about hot flashes. That was about the extent of it. Which you know – it’s okay. I’m allowed to not know things – but I get the sense that that’s all a lot of doctors know about menopause as well.

Here’s the thing – aside from compulsory mammogram and pelvic exams – women’s health is dramatically under examined. For the majority of modern medicine’s history, men have been seen as the norm and women as the deviation. In clinical trials of many things, only men were studied and the results were applied to women. And one of the extraordinarily infuriating facts about this is that women were excluded from such things because we have a menstrual cycle. So rather than study the hormones or the varieties of the menstrual cycle – science and medicine have mostly just told women to go ask our mothers. (An actual thing a doctor said to a woman asking about menopause.)

In treating my (possible) perimenopause symptoms, I’ve seen four neurologists, several physical therapists, two opthamologists, two behavioral optometrists, tried antidepressants, anti-convulsants and endless triptans. The first thing in two years to make a real dramatic difference is a low dose of estrogen. I mean…here is modern medicine looking at everything but the source, everything but perimenopause.

No one wants to talk about perimenopause or menopause. It is incredibly taboo. Initially, I suspect the more medically accurate language was supposed to help us make it less so. Like the movement to use anatomically correct language for our genitals, calling menopause menopause was once thought to be a way to liberate us from the stigma. But I don’t think it has.

So, I’m liking “The Change” – even if it sounds a little old fashioned. It is a good descriptor for what I’m experiencing. It makes me feel like a superhero in mid-transformation. I’m Peter Parker in the process of getting bitten by that radioactive spider. It doesn’t necessarily feel good during the transformation itself but once I come through it, I fully expect to be a more powerful superhero on the other side of it.

And since no one can tell me whether or not the change I’m in the middle of is actually perimenopause – since there is no medically precise definition of this moment for me – The Change is actually a more accurate description of what is happening to me. It’s certainly A Change if not The Change. And a lot of my friends are also going through A Change. A transformation. We’re going into a phone booth – like the one Clark Kent changes into Superman into. Maybe since we don’t really use phone booths anymore, we could co-opt the word. Like, when I explain what’s been going on with me these last few years, I could just say, “Well, I’ve been in the phone booth.”

Because, while these headaches suck, a lot, while it has been no fun in this phone booth, I will say that the benefits of this transformation are not bad. Pretty much everything that drove me crazy about myself in my 20s has faded. In my youth, I was constantly beating myself up for being too nice, for putting up with things that I didn’t like, for not saying what I thought. And I have, as I have entered the phone booth, grown much bolder, much less concerned about others, less fearful and much more direct and clear. It’s everything I wished I could be twenty years ago. The phone booth has these terrible health side effects but it has given me the super power of transforming myself into the person I wanted to be and never thought possible.

This blog is also a podcast. You can find it on iTunes.

If you’d like to listen to me read a previous blog on Anchor, click here.

screen-shot-2017-01-10-at-1-33-28-am

Every podcast features a song at the end. Some of those songs are now an album of Resistance Songs, an album of Love Songs, an album of Gen X Songs and More. You can find them on Spotify, my websiteReverbNation, Deezer and iTunes

*

Want to help me make it through my time in the Phone Booth?

Become my patron on Patreon.

Click HERE to Check out my Patreon Page

*

Writing on the internet is a little bit like busking on the street. This is the part where I pass the hat. If you liked the blog (but aren’t into the commitment of Patreon) and would like to give a dollar (or more!) put it in the PayPal digital hat. https://www.paypal.me/strugglingartist

 

Advertisements


Migraine Pose

A fashion magazine reported on a trend in modeling which they called the migraine pose. Instagrammers pose with fingers pressed into temples and tag them #migrainepose. The migraine community was not amused. For many, this fashion trend belittles a very serious and painful condition. It feels insensitive – like starting a trend of shaved heads and calling it #cancerchic.

But as a migraineur myself, I just find it kind of hilarious. And I just want it to go farther. Like – let’s make ice hats and headbands fashionable! Let’s get some shots of us out at fancy restaurants with our thera-band medical ice headbands washing down triptans with iced coffee. (Or in my case, mixing up a delicious dried up old toothpaste flavored packet of Cambia.) Dress me in an evening gown, give me a make over and then let the make up run down my face from the ice melting. Or running from the tears. I want glamour shots with bags of frozen peas. I want gauzy filters over migraineurs tucked into their beds in the dark with only an arty lamp to see them by.

There’s something about making an invisible illness visible that is extremely powerful. I started to think about this when I was struck by a migraine out in public and I tried this portable gel “ice” pack that I found in a Japanese market. It’s this weird sticky cooling thing and I stuck it to the left side of my forehead in the middle of the Starbucks at Barnes and Noble. And suddenly, I was aware that my usually very private experience of suffering had become public. Anyone looking at me could register this odd bandage on my head and know that something was amiss. They probably didn’t know what but it was suddenly clear that something was.

One of the reasons migraineurs have to fight so hard about things like the #migrainepose is that strange contradictory stigma of not looking sick, of being seen as having “just a headache” when, in fact, migraine is a much more comprehensive neurological disorder. (Major media campaign is “It’s not just a headache!”) So I’m thinking it might be time to start walking out in public with my ice hats. Of course, if it’s a really bad migraine, there’s not even a chance of my going anywhere. Those #migraineposes will be in bed, with a puke bucket nearby. (Luckily, this is rare for me if I have access to good medication.)

I felt a bit embarrassed walking around with my weird gel pack stuck to my forehead and yet also suddenly accurate. My outside was accurately reflecting what was happening inside.

It reminded me of what happens when I walk around with my guitar strapped to my back. People look at me with more interest. I become more visible and I always feel funny about it, like, I want to dismiss their interest, say to them, “If you’re thinking I’m cool because I’m carrying this guitar, that’s very silly” but I also understand that people’s perceptions of me are more accurate in those moments. I am always a person who plays guitar, even when I’m not carrying it around. Sometimes that outward expression matches my inward self. (Whether or not that makes me cool is a whole other question. I mean, I am. My dentist thinks so anyway. But.) Likewise, when I walked around with a gel pack stuck to my head, suddenly my outward expression reflected an actual real lived experience.

Culturally, we want everyone to be okay all the time. We ask people how they are, expecting them to say fine. The cultural norm is to be disturbed by anyone with a diverging experience – an injury, a disability, an illness. I feel my own pressure to be appear to be fine even when I’m in pain. But no one is okay all of the time. And finding ways to include the range of people’s experiences – particularly those who are suffering or have disabilities – will create a more compassionate society. Disability activists are leading the way here. (Read this amazing article about wild disability justice dreams.)

It begins with making the invisible visible. For those with invisible illnesses or disabilities, that means finding ways to make them visible. For people with disabilities or illnesses that are harder to ignore, we need to start seeing the things that surround those experiences. We need to see the extra time it takes to get somewhere without appropriate accessible transportation. We need to see what happens when someone who needs access to plastic straws loses that access. And we need to seek this knowledge out, instead of expecting to be educated or convinced of that need by those who are already overextended.

For example, I knew that the NYC subways are a disaster in terms of their accessibility. It is a great blight on our city. The newly remodeled train station near me now features many flashing screens but still has no elevator. It’s happening all over New York – brand new flashy subway stations that are still not accessible. Anyway – that’s a side note. What I’m saying is, I knew the subways were bad in this area but even so, Zach Anner’s video about trying to get a rainbow bagel made me understand much more fully what that lack of access really means to someone in a wheelchair. And it’s so much worse than I thought. Visibility is key, I think.

But also invisibility. Like, if you’re not seeing folks with wheelchairs or other mobility aids at your job, it’s probably likely that there are accessibility issues in your workplace. Looking at who is missing is as important (if not more so) than looking at who is there and we all need to get better at inviting the people who are missing.

And if I’m wearing an ice pack, I showed up with a migraine – maybe give me a (gentle) high five because I showed up and it wasn’t easy. But odds are pretty good that I could have a mild migraine and never mention it. So…you know…sometimes I’ll show off my migraine pose and sometimes I won’t. Also, if someone could invent a more portable ice hat situation, one that could get multiple uses without me having to lug around a melted ice hat, I’d be super excited about that. Then, I’d be migraine posing all over the place.

Mmm. Won’t this delicious looking water be even tastier once I’ve mixed in that chalky minty powder?!

*

This blog is also a podcast. You can find it on iTunes.

If you’d like to listen to me read a previous blog on Anchor, click here.

screen-shot-2017-01-10-at-1-33-28-am

Every podcast features a song at the end. Some of those songs are now an album of Resistance Songs, an album of Love Songs, an album of Gen X Songs and More. You can find them on Spotify, my websiteReverbNation, Deezer and iTunes

*

Like the blog?

Become my patron on Patreon.

Click HERE to Check out my Patreon Page

*

Writing on the internet is a little bit like busking on the street. This is the part where I pass the hat. If you liked the blog (but aren’t into the commitment of Patreon) and would like to give a dollar (or more!) put it in the PayPal digital hat. https://www.paypal.me/strugglingartist

 

 

 



“He just came with the building”

An artist has died. He got cancer and some other things and he died in the prime of his artistic life. I did not know him well but I knew of some of his struggle and I knew his artistic skill and promise. He was a composer (an art which is incredibly demanding and does not pay well – except for a very privileged few) and worked as a pianist for many years at a well-known arts institution.

After the artist had worked there for some time, that arts institution finally managed to provide some of its long-term artistic staff some health insurance. This was an important gesture and I can attest to the fact that it doesn’t happen everywhere. I think I know around about when this gesture happened. I was still working as a Teaching Artist when arts organizations all over the city suddenly started making its long term artistic staff actual employees. Apparently, they’d come under some scrutiny for getting away with paying all of us as freelancers for so many years. But even in that flush of sudden employment and a sheaf of W-2s where I once had 1099s, no one ever offered me health insurance I could afford. So this arts institution, where the artist worked, did something really good. And for a brief while, the artist experienced some actual security. He had health insurance and a bit of regular work.

Then, after they’d gotten used to it, the arts institution decided to withdraw the health insurance from those they’d previously provided it for. They didn’t fire those folks. They just took away their health insurance in order to save a little money. It was probably just a line item on a budget to them. The arts institution took away the artist’s health insurance and very soon thereafter, the artist got sick. He’d had health insurance and then it was gone and then he got ill. His friends set up a Go Fund Me – but healthcare is expensive and they did not reach the goal.

Maybe even if the artist’s Go Fund Me campaign had been fully funded or he’d still had health insurance, he would have died anyway. But also maybe not. I can’t help feeling like the arts institution has his blood on their hands. I feel like they killed him.

A few months later, the arts institution provided a free space for the artist’s memorial performance. The titular head of the arts institution took to the stage to welcome everyone to his building. He made a speech about the dearly departed artist and said he didn’t know dates or anything but he’d known the artist for ages. He said “He just came with the building. He’d just always been there.”

And I’d already been wishing I had a pile of rotten tomatoes to throw at this guy who was getting all kinds of praise for “generously donating the space” when his organization so egregiously contributed to his healthcare situation. But when he said this thing about the artist just coming with the building, I wanted a whole truck of rotten fruits and vegetable to throw at him. An arts institution decides to take away an artist’s health insurance, as a result he dies and then the arts institution gets to look like a hero for giving up their space for a day? And THEN “he just came with the building”?!?!?!? I mean. You couldn’t ask one of your assistants to tell you how long he’d worked there?

And of course you took his health insurance away. He’s just part of the building. Building fixtures don’t need health insurance.

Of course he’s just part of the building. That explains why, despite many years of knowing him, you never once listened to one of his compositions. Parts of buildings don’t have their own artistic work, they are just part of the landscape. And this is how artists are often regarded – not as human beings making art that have needs just like any other human being – but as part of the atmosphere. We’re like the furniture. You use it for a while and then when you get a new interior designer, you throw it out for the next set.

This Arts Institution Head managed to express, in one dumb joke that was clearly meant to be charming, the way so many artists are viewed in institutions. Not as the very reason for the institution. Not as vibrant participants in the artistic life of the place. Not as contributors. Not even as artists. Just – part of the building.

The building just comes with artists – whose lives are as inconsequential as the dust that gets swept up on Sunday nights.

And so the artist’s work will likely be lost to the ages. And the building will stand. And another artist will come to be seen as part of the building eventually.

 

This blog is also a podcast. You can find it on iTunes.

If you’d like to listen to me read a previous blog on Anchor, click here.

screen-shot-2017-01-10-at-1-33-28-am

Every podcast features a song at the end. Some of those songs are now an album of Resistance Songs, an album of Love Songs and More. You can find them on Spotify, my websiteReverbNation, Deezer and iTunes

*

You can help be more than part of a building

by becoming my patron on Patreon.

Click HERE to Check out my Patreon Page

*

Writing on the internet is a little bit like busking on the street. This is the part where I pass the hat. If you liked the blog (but aren’t into the commitment of Patreon) and would like to give a dollar (or more!) put it in the PayPal digital hat. https://www.paypal.me/strugglingartist

 



Migraine and the F-ing Patriarchy

Warning: There’s a lot of swearing ahead. If swearing bothers you – just skip this one. There are very few sentences below without expletives. If you love swearing, keep going. This post is for you.

*
This week, I watched a series of videos as part of the Migraine World Summit. One of the doctors asked a question that made me sit up and take notice. It was “What is the migraine trying to protect me from?”

I wrote it down. I decided I’d think about it, maybe write down some ideas, see what bubbled up in a long contemplative session with my pen. Maybe I’d uncover some deep secret about the migraines that came into my life in 2016. Maybe something about a food allergy or an environmental trigger. Maybe it’s my hormones?

On my way to go do this, as I was walking, I just sort of casually asked myself, “What is the migraine trying to protect me from?” And the thought came through like a shout. It was “THE FUCKING PATRIARCHY!”

I laughed out loud in the middle of the street. Oh. Okay. I guess it’s the fucking patriarchy – no long self-examination needed. I hear you. It’s the fucking patriarchy.

I can’t say I hadn’t thought of this before. My migraine situation kicked in in the summer of 2016 when the election was kicking up extraordinary misogynistic dust and I was sneezing a lot and every time I sneezed, shooting pains ran up the sides of my head.

But maybe it was my eyes? Maybe it’s my age? Maybe it’s the weather?

For almost two years, I’ve been wrestling with a mysterious migraine climate in my head, a world with seemingly no clear triggers, a world that has been disabling in many ways. Because I have been relatively healthy before this late onset patriarchy allergy, I have not been clear about how I want to talk about the experience. Because the American Health Care system is an immoral mess and we’re living in a surveillance capitalist dystopia, it felt like maybe keeping my diagnosis under wraps was the safest move.

But after listening to doctor after doctor on the Migraine World Summit describing the stigma their patients endure, I just can’t be quiet about this anymore. Not now that I know the migraine is trying to protect me from the fucking patriarchy.

“But Emily,” you may be saying, “how does a condition that compels you to stay home in a dark room with ice on your head protect you from the fucking patriarchy?”

Well, if I don’t go out into the fucking patriarchal world, my only exposure to it is what I let in via the internet and what not and even that is a little too much patriarchy for me these days.

“But Emily,” you say, “this is crazy. Migraine is a neurological disorder that people have had for as long as we have recorded history. It can’t be an allergy to the patriarchy, probably even some patriarchs got migraines!”

Well. Maybe those patriarchs were allergic to themselves. But seriously. I’m not saying everyone’s migraines are trying to protect them from the fucking patriarchy – but mine are.

“But Emily,” you say (and when I say you, I mean the part of me that is also resisting this idea) “just because migraine is mysterious in its causes and mechanics doesn’t mean you can just go attributing it to the fucking patriarchy. There are many possible factors, environmental conditions, foods, stress, etc.”

Yeah, see – it’s that stress component that makes me think it really could be the fucking patriarchy. Because you know what really stresses me out? The fucking patriarchy. I mean, sure, it always has – but before 2016, I really thought we were on a positive wave away from misogyny and sexism and the fucking patriarchy. It was very stressful to realize that was not the case. And I’m thinking the migraine was like, you know what? Fuck this. We’re out. Take a break, let’s see if we can skip this fucking patriarchal clusterfuck that’s coming down the pike.

Would I prefer to not have the migraine protecting me? I would. I would rather have strength and will and many pain free days to kick the doors of the fucking patriarchy down. However – the migraine just wants to protect me from the fucking patriarchy; it’s not a logical rational thing that can distinguish when the appropriate time to do this is.

One of the doctors in the summit described the migraine as the “Check Engine” light of the body. He described a car going down the highway and when it begins to overheat, you have to pull over, take it off the road and give your car a rest. In other words, migraine isn’t so much the problem as the response to a problem either within a person or in the environment. The problem can be inside or outside. One doctor described the migraine brain as being a RESPONSIVE brain. It’s not just sensitive, it’s reactive.

That is, if the fucking patriarchy kicks into high gear all of a sudden in 2016, my migraine brain has a fucking response. When the fucking patriarchy is having the best couple of years it’s had in my lifetime, like it’s having a fucking patriarchal parade/rave/party, my brain will not allow me to go on, business as usual. The fact that I do not like the response, that the response is disabling and frustrating and all kinds of upsetting is a bit beside the point. My check engine light is on and I have to do something about it.

The difficulty is that this is not a diagnosis I can bring to my neurologist.
“Do you have a sense of what brought this on?”
“Uh, the fucking patriarchy?”
I don’t think this would go over very well in my doctor’s office. And even if my doctor was like, “Damn! Another patriarchy trigged migraine patient!” I’m not sure there’s much they could do about it. But the fact is, they can’t do much about it now.

Migraine is already woefully under-researched and underfunded. And the fact that 75% of migraineurs are women suggests that the medical field tackling this already have their own battles with the fucking patriarchy. Probably adding “the Fucking Patriarchy” to the list of possible migraine triggers, next to red wine, aged cheese and cleaning products won’t really help our case.

For me, though, hearing directly from my body’s inner voice that it’s the fucking patriarchy really clears a lot of things up. And I start to realize that the stigma and risk around disclosing something like migraine is also a factor of the fucking patriarchy. The fucking patriarchy suggests we should all work ourselves to death, never acknowledge “weakness” of any kind, never have an unproductive minute. The fucking patriarchy is Jeff fucking Beauregard fucking Sessions the fucking Third telling people with chronic pain to just take an aspirin and get back to work and the entire fucking GOP who worked like hell to deprive millions of people of their health insurance. The fucking patriarchy thinks having health insurance is a fucking privilege – it thinks that only fucking wealthy white dudes should get to be healthy – and even then only when they “man up” and do the jobs they think are fucking macho enough.

But I digress. That’s one of the fucking symptoms of my fucking migraines – a lessening of my ability to focus, a brain fog, a blunting of my sharpness and an occasional swiss cheesing of my brain that happens when I try to deal with the fucking patriarchy.

And hey, all my fellow migraineurs (and there are a lot of you, I’m learning – 1 in 7 people) I obviously have no idea if the fucking patriarchy has anything to do with your migraines the way it does mine but I don’t think it would do us any harm to blame it anyway. If for you it’s red wine or dehydration and not, say, the fucking patriarchy, I mean why not just get a kick in for the fucking patriarchy. I don’t have a lot of hope that the fucking patriarchy is going down in my lifetime but I will happily kick it every chance I get.

When I’m lying in the dark with ice strapped to my head, fantasizing about a head removal service, I think I might just be able to muster a “and by the way, fuck you, patriarchy.” This morning, when I woke up with a different style of headache than I’m used to, one which I wasn’t sure was actually a migraine, I still blamed it on the fucking patriarchy. And you know what? I felt a lot better every time the words “fucking patriarchy” came out of my mouth. I blame the fucking patriarchy and I didn’t even care if this most recent headache was not its fault. But it probably was.

This blog is also a Podcast. You can find it on iTunes. If you’d like to listen to me read a previous blog on Soundcloud, click here.

screen-shot-2017-01-10-at-1-33-28-am

Every podcast features a song at the end. Some of those songs are now an album of Resistance Songs, an album of Love Songs and more. You can find them on Spotify, my websiteReverbNation, Deezer and iTunes

*

You can help me fight the fucking patriarchy

by becoming my patron on Patreon.

Click HERE to Check out my Patreon Page

*

Writing on the internet is a little bit like busking on the street. This is the part where I pass the hat. If you liked the blog (but aren’t into the commitment of Patreon) and would like to give a dollar (or more!) put it in the PayPal digital hat. https://www.paypal.me/strugglingartist



Health Care and the Struggling Artist

American Health Care Horror Stories are all so abstract until it happens to you. Every time I heard about another failure of American health care, I was horrified anew – but because I was healthy, it was like reading about an atrocity on another continent – terrible but distant. I spent most of my 20s and 30s so healthy that I went without health insurance for the better part of both of those decades and got away with it. A couple of ankle turns and an X-ray or two and I got away with spending a whole mess of a lot less than I would have if I’d been paying for health insurance. Like, a LOT. When you’re a struggling artist, gambles like this make sense for a while. (If you’re lucky.)

But, luckily, the ACA happened before I got unlucky and it was finally possible for me to afford insurance. Through the NY Health Exchange in the last few years, I have been insured through three different insurance companies as well as the expanded Medicaid program. I am a direct beneficiary of Obamacare. And I am grateful. And, for the first time in my life, I really need the insurance as I started dealing with my first real health crisis. What’s funny about having insurance after not having it for so long is how shockingly unjust it can be. When you are without, you think – ah, well, if I had insurance, it would be better. Ah ha ha ha!! Not so fast!

I have been stunned to see how little of my healthcare has been paid for. When I learned that the one medicine that halts my migraines was denied by my health insurance company as “not medically necessary,” I was shocked. And I was shocked again to learn that if I bought it myself, it would cost me $600. For NINE doses. The drug company offers coupons for it but because my insurance is tied to Medicaid, I am not eligible. In other words, because I don’t make much money, I am not eligible to save money and my access to a truly beneficial medicine was denied. At every stage of this process, I was surprised anew at the madness. But my situation is not unique. So many Americans face obstacles of this kind (and usually much much much worse) that these stories are the norm. We become immune to each others’ health woes because they are so normal.

The ACA isn’t great. But it’s better than the nothing I had before. And with health insurance companies in the mix. I don’t know how it could ever be better. Obviously, Universal Health Care is the much better option but it is not yet an option in these baffling United States. My state keeps passing a Single Payer bill in the State Assembly but every year it gets rejected by the more conservative Senate. Fingers crossed for this year. (Call your Senator, New Yorkers!)

Being sick in America is incredibly expensive. The majority of bankruptcies are health care related. It’s ridiculous of course. But denying coverage for 23 to 24 million people is not the answer. Returning to the Wild West with denials for pre-existing conditions, like being a woman, for example, is not the way. My most recent insurance company was terrible. But it was better than having no insurance at all. If I were un-insured I could not have even seen the doctor who gave me the samples of the medicine that works. My insurance meant I only had to pay $330 for the hour with my doctor instead of $550. It’s still terrible. But not AS terrible with insurance. And luckily, I was already in the process of switching insurance companies when this craziness with my medicine went down and not only did my new insurance company approve my prescription on the first day of my coverage, my amazing pharmacist brought the medicine to me because we live in the same neighborhood. There are extraordinary heroes in this very flawed system.

As for those who would deny coverage to those who are suffering, I found myself fantasizing about giving them that Virtual Reality migraine simulation headset, of which my friend sent me a video. It appears to give a replication of the visual migraine experience (minus the pain.) In the video, you see people quickly requesting the removal of the headset. But in my fantasy, when the health care deniers ask to take it off, I refuse, because it is not strictly medically necessary. In real life, I know I would cave pretty quickly but in my fantasy, I get them to sign approvals for all migraine relief meds for everyone before I let them take that thing off.

 

Help me stay healthy,

Become my patron on Patreon.

Click HERE to Check out my Patreon Page

kaGh5_patreon_name_and_message*

This blog is also a Podcast. You can find it on iTunes. If you’d like to listen to me read a previous blog on Soundcloud, click here.screen-shot-2017-01-10-at-1-33-28-am

*

Writing on the internet is a little bit like busking on the street. This is the part where I pass the hat. If you liked the blog and would like to give a dollar (or more!) put it in the PayPal digital hat. https://www.paypal.me/strugglingartist

 




%d bloggers like this: