Category Archives: dad stuff

i don’t know how to insure my child

needless to say, i have been gobbling up the parenting books in the past few months. some are funny, some are helpful, some are just obnoxious. some make me realize how many little things i haven’t even stopped to consider when it comes to this whole parenthood lark. the book i am reading right now (the must-have mom handbook) has an entire chapter on how to educate & protect your kids from sexual predators. it’s all helpful info, & they do an excellent job of explaining that both boy & girl children can be preyed upon by sickos, & may respond differently, & differently-gendered warning signs to keep an eye out for, & even that the sexual abuse of boys by adult men has nothing to do with homosexuality. but…OMG! sexual predators! god, i hadn’t even thought about that!

i am officially five months pregnant now & while i was perusing some fetal development website for milestones, i noted that they recommended i start interviewing potential pediatricians. because, duh, newborn babies are supposed to go see their pediatricians like five days after they are born. on some level, i knew that, but on another level…i thought maybe some god of pediatricians just assigns one to you & you don’t actually have to do any work. but not only do you have to seek out & select a pediatrician before you even meet your baby, you also have to find a way to pay said pediatrician, ie, health insurance.

this isn’t so difficult for normal people with normal health insurance to which they can add a dependent by making a phone call or filling out some basic paperwork. but i’m a medicare recipient thanks to being on disability. medicare obviously doesn’t allow me to add a beneficiary to my plan. jared gets health insurance through the university, because he is employed by them, but for some reason, we assumed he couldn’t add a dependent either. in retrospect, this was kind of a dumb assumption. he has the same health insurance as all the professors & everything, & obviously they have insurance for heir spouses & children. so we were pleased to discover that he could add the baby to his plan. we were less pleased when we discovered that it would only cost $400+ a month! what a bargain, amirite? why, that’s only 20% of our total monthly income!

but, you know, surely there are subsidies that we would qualify for that would bring the costs down a little. jared went up to the university to ask around about this, & that’s when he discovered that his paperwork for this school year had been misfiled & he was classified as a student rather than an employee. not only does that eliminate the option to add a dependent to the plan, even if you are somehow able to afford the cost, but it also means that his own premium skyrockets like ten times in price (& trust me, the employee rate isn’t chump change). it’s fixable–it’s obviously just an HR mistake & they can re-file him properly. but we need to wait for them to take care of that, & then ask about subsidies, & then see if we qualify, blah blah blah. meanwhile, my due date is about 18 weeks away, & jared intends to spend eight of those weeks out of town doing dissertation research. & because this is all HIS insurance, there is nothing i can do while he’s gone to speed the process along. school will also be out of session for winter break for five of the weeks when he is here, & he won’t be able to pursue insurance questions then either because the university will be closed. so that leaves us five weeks until my due date during which we can get to the bottom of his mess. & perhaps i didn’t mention that three of those weeks will be spent with jared preparing for his master’s exams. & one will be spent on a “babymoon” together in boston. so…one week.

oh my god.

so i looked into healthwave, which is kansas’s medcaid program. income-wise, we qualify. on their website, they say they don’t count “social security or SSI income” toward the eligibility requirements. because my disability is the lion’s share of our income…does that mean they won’t count it? in which case we would qualify for the free insurance? or does it count as SSDI because it’s for disability, & therefore they will count it & we will only qualify for the subsidized insurance? it matters because apparently you can’t apply for healthwave on behalf of a newborn until said newborn is born. & obviously there’s a bit of a waiting period while your application is processed & considered. with the free insurance, you have three months of retroactive coverage once it kicks in, which means baby’s first visits to the pediatrician would be retroactively covered. but the subsidized insurance only takes effect upon approval, meaning any medical care the baby requires before the application is approved would be our financial responsibility. & considered that a simple blood draw at our local hospital costs $250 without insurance, this could swiftly break the bank.

naturally i called the helpful healthwave customer service line to inquire. first i asked if they would require proof of name change paperwork for me, since there’s a section on the application for “other names used”. the guy said, “if your name was changed on your birth certificate, then no.” huh? what does that mean? i legally changed my name & no longer use my former name, but i never got a new birth certificate with my new name on it. i have a new social security card & a new state ID, etc etc, but no one even told me it was possible to change your birth certificate, let alone that i should. i asked what proof of identity they would need & he said, “copies of your social security card, birth certificate, & state ID.” but…it’s illegal to photocopy to a state ID. i mean, people do it anyway, but it seems a little crazy for them to request an illegal photocopy to process an application for state-funded health care, right? i asked about the disability thing & he said, “we consider social security to be unearned income.” okay…what does that mean? it counts toward your income eligibility or not? he repeated, “we consider that income unearned.” o…kay…but could you answer the question? i’m also confused because most of my social security income is collected on my dad’s record, & that could be considered a social security pension, because it’s the money he would have collected had he lived to retirement age. i am supposed to classify the income myself on the application (SSI, social security annuity, social security disability), & i honestly don’t even know how to categorize it, let alone how each categorization would affect my eligibility. nor do i know how to find out.

so right now i am kind of hoping that we can just find some subsidies that will make it affordable to add the baby to jared’s insurance, because healthwave seems crazy complicated & confusing. but, as with all obnoxious things that have transpired during this pregnancy, i know it is but a taster of the crazy bureaucratic hoops i will have to jump through constantly on behalf of my child. argh!

plan-it-xyerra fest

inspired by jared’s sterling example of internet restraint, i installed leechblock on my browser & blocked all the pregnancy/trying to conceive websites i like to look at. i just don’t have any self-control with them. i can spend hours scrolling through old posts, looking at people’s fertility charts, comparing them to my own & wondering if i might be pregnant this cycle. now i am only allowed to look at them for ten minutes every four hours. this is going to free up A LOT of time that i hope to use for writing, reading my way through the teetering stack of library books that is constantly replenishing itself like some kind of evil horcrux-concealing potion, & wandering around town getting lost.

yeah, so i still don’t know if i’m pregnant or not. but that should change within the next few days. i tested with a dollar tree test yesterday & saw two lines for sure, without a doubt. it’s just a question of whether that second line is for real, or if it’s an indent (where the test chemical leeches out of the strip, leaving a nearly-imperceptible divot behind–it can read as a shadow, which can read as a very faint positive test). i took a more expensive test this morning, & again, there was just the tiniest whisper of a line, which also could have been an indent. i’m just assuming that they are indents, & that i am either not pregnant or testing too early. i have a whole stockpile of tests in reserve & will just use one every day until i get an answer.

i am trying to prepare myself for the likelihood of once again not being pregnant. i know there are some women who don’t get positive results on their home pregnancy tests until they are like a week late for their periods. but there are so many places on the internet where ladies suffering the ravages of baby rabies congregate together to discuss how they got their positive pregnancy tests like a week BEFORE their periods were due that i am feeling kind of shitty. i’m not late yet. logically, i know i could be testing too early. emotionally, i am beginning the process of giving up for this cycle & trying to find a silver lining.

i have one more cycle left with just the 50mg of clomid before i have to regroup with my doctor & come up with an alternate approach. i had an appointment with her a few days ago & she said she would probably just double my dose of clomid. i don’t really understand how that would work. clearly, i am ovulating with 50mg. taking 100mg instead would only increase my risk of becoming pregnant with multiples or suffering ovarian hyper-stimulation syndrome, which could result in the loss of one or both ovaries (& hence, even more compromised or totally eliminated fertility). but i am trying not to worry about that for now.

if i don’t get pregnant this cycle or next, i am taking a break. i need some time off from all the drugs, & jared’s probably going to be presenting at a conference in western mass when i’m ovulating in april anyway. it’s weird to think that if i’m still not pregnant by then, i’m looking at a year-plus until i finally have a take-home baby…at the earliest.

anyway! today jared & i took a walk & went by the first house we lived in when we moved to lawrence. we had to move out almost immediately because there was an enormous hole in the roof above the window we intended to use as a bedroom. rain poured inside like a waterfall. that’s not an exaggeration at all. a person easily could have showered in there during a thunderstorm. we had the apartment condemned by the city in order to get out of our lease. that was two & a half years ago. there’s clearly someone living up there now, judging from the totally bitchin’ grateful dead tapestry tacked up over the window…but it’s obviously still not fixed. the entire window frame is rotting out. it’s amazing what slumlords in lawrence can get away with, just by rolling the dice & hoping that their next tenant is going to be too stoned to call the city & report them.

we cut through a church parking lot on the way home & i found a dollar bill flapping on the ground. i pocketed it & immediately said, “i wish it was a hundred-dollar bill.” i feel like this story sums up everything that is wrong with me as a person. i took money that i found in a church parking lot, & rather than being thankful, i immediately complained, out loud, that i hadn’t randomly found one hundred times more. i am seriously such an asshole. not that i am really all that interested in changing that aspect of myself.

but i am interested in no longer drinking (or eating, if i can help it) things that contain high fructose corn syrup. i’ve gotten way into ginger ale because it helps with the nausea i experience on my fertility meds. but the ginger ale from the regular grocery store all contains high-fructose corn syrup, which is basically just liquid type 2 diabetes germs. my dad & my paternal grandma are diabetic…well, my dad was before his diabetes killed him at the tender age of 48. i feel like i really need to watch it, especially because my blood pressure is looking a little high these days…so i guess jared & i are going to start making our own ginger ale with homemade ginger syrup & carbonated water. it’s all very folk-punk. don’t be surprised if you see me running a zine delivery service by bicycle & holding weekly bonfires where everyone just hangs out, sharing their tips for cutting a good stencil or cobbling shoes.

i don’t really want a community

i haven’t written here in so long that the wordpress website got kicked off my cache of most-frequented websites. even more shameful, internet solitaire replaced it.

august was something of a lost month. i enjoyed my last few weeks of spinster summer by hanging out in a truck pool, going to some punk shows, going dancing, getting drunk a lot, kicking back on the front porch listening to blue oyster cult, & signing up for a 6:30am water aerobics class. i read three books all month. usually i read a book a day, on average.

i may have mentioned previously that i keep a daily log–a diary, i guess? if we are using the old-fashioned definitions of “diary” (a book in which you write down what you do) & “journal” (a book in which you write down how you feel). i keep both, actually, but i’m a lot more devoted to the diary. i actually take notes on what i do every day so i can transcribe them as stories in the diary. which often strikes me as ridiculous because i am not exactly a lion tamer or a bomb defusing technician. the sentence “i cleaned the bathroom today” appears in my diary with surprising frequency.

anyway, i really fell behind in writing up my days during spinster summer, & after jared got back, i even stopped keeping my daily notes. today was the first really perfect day we’ve had in lawrence in months–perfect weather for putting on jeans & a hoodie & sitting outside somewhere, writing. so i went outside & tried to catch up on the diary entries for the days for which i did not have notes. the shitty part is that the reason i didn’t bother taking notes is because i was too fucking anxious, depressed, & miserable. the last few weeks of august were some of the worst weeks of my entire life. possibly flying out to ohio to attend to the details surrounding my dad dying, which culminated in me having a vaso vagal episode & needing to be rushed to the hospital in an ambulance in front of the already-traumatized four-year-old my mom babysat for at the time was worse…but only slightly. i feel that the worst is behind me at this point, but i had to relive it to write about it & i managed to thoroughly bum myself out.

& you know how it is when you’re bummed out, especially about something that is kind of a non-issue. you kind of start looking for other reasons to be bummed out. i didn’t have to look too far to get kind of bummed out by some friend issues. i have a friend in lawrence who is really hating on lawrence right now. luckily for her, she is also making plans to move away to another city. unluckily for me, this means she feels totally free to talk at length about how much lawrence & almost everyone in it blows. i am likely to be living here for at least another couple of years & i really want to try to make the most of it, so this isn’t really my favorite topic of conversation. plus, you know, there are some people in this general area that i really like. i have had some really good times here recently (see above: truck pools, punk shows, etc).

when i mentioned this, she said, “of course you don’t mind lawrence. everything worked out for you. you moved here, everyone likes you. you have a community.”

i feel like there’s so much wrong with this statement. everything most certainly did not “work out” for me. allow me to present the evidence: I LIVE IN FUCKING KANSAS. in what world can that be construed as “working out” in any way? i am just trying to make the best of a pretty shitty situation here.

second, i guarantee that not everyone likes me. never in my life have i ever been in any situation where everyone liked me. unless maybe i have been sitting in a room all by myself. i didn’t get this far in life without realizing at some point that i have a very divisive personality. some people love me, some people hate me. there are plenty of people in lawrence who fucking hate me. just because i don’t care doesn’t mean that anyone should be laboring under the delusion that i am universally feted & that the mayor is making plans for a ciara day parade…though i imagine a ciara day parade would look a lot like this:

& third, there is a world of difference between “everyone” (or even just some people) “liking” someone & that person having a community. i wrote quite a bit in “love letters to monsters” #3 about how i don’t even really believe in the concept of “community” (as employed by punk/activist types) anymore. everyone seems to use that word to mean something different. some people think that a person has community if they have people they can call up & freak out to at 3am. that doesn’t apply to me because i’m kind of beyond the stage in my life where i am going to call anyone at 3am unless it is a pretty serious fucking emergency, & then i’d probably be calling 911 or something. some people think that a person has community if they have some friends to bro down with at a show or something. but you can bro down with a fleeting acquaintance in a social setting just as easily as you can with someone who has vowed to have your back for life.

i think a lot of people confuse “having community” with “having friends,” with the caveat that once you have turned said friends into the mythical community, you get to…stop trying or something. but all relationships require effort. i have friends i’ve been tight with for over ten years & i still have to work a lot of times to make time for them, see their points of view, etc. & with the kids in lawrence that i “have community with,” it’s even harder because they are newer friends. & they are younger friends. they are still in that stage of life where the think it counts as “hanging out” if they randomly bump into me on the street when i’m out buying stamps. i like a little more intention in my relationships, personally. these are kids that don’t reliably answer their phones or return texts, & with whom i have spent far more time drunk than sober. they are very wonderful, funny, entertaining, sweet, helpful, thoughtful, interesting people…they are friends. new friends. with whom i am still finding my feet. “community” makes me think of shit like co-counseling (ugh) & accountability processes &…well, jared put it best when he said, “the difference between friends & community is that community is still there even after it decides it doesn’t like you as a person.” i don’t expect anyone to stick around after they’ve decided they don’t like me as a person, so let’s just be friends, okay?

grief is a spiral

i realized the other day that spinster summer is more than halfway over. the first half went pretty smoothly. it seemed to fly by, really. maybe it was a mix of having the opportunity to see jared a lot (because i spent the first six days in boston with him, & then i only had about two weeks by myself in kansas before i flew back to boston to spend my birthday with him) & the novelty of having all the alone time i wanted. but now i am in the big stretch of not seeing him for a month, & some of the excitement of having the house to myself has dissipated. it’s getting more difficult.

i threw myself a little birthday party on saturday so i could spend some quality time with friends in kansas. i wasn’t anticipating a rager, because 32-year-olds, as a general rule, don’t really rage a whole lot. i also don’t know that many people in lawrence, & at least half of the people i do know are out of town for the summer. plus lawrence is a weird place. you actually have to be kind of popular to get people to schedule you into their busy weekends. maybe it’s a college town thing? or maybe it’s just a life thing. i was competing against a couple of going away parties & whatever it is more fun-loving people get up to on weekends, so it was pretty sedate.

jaimie offered to make me a birthday cake. although she is trying to maintain a gluten-free diet, she said that cakes are “how [she] best expresses [her] creativity.” she asked me for flavor & them suggestions. i offered chocolate, vanilla, hazelnuts, & cats.

this is what she came up with.

the cake part is shaped like a zine. half of it is chocolate & half is vanilla (though the chocolate got greedy & colonized the vanilla half a little bit). the creature is in fact a rice krispie treat molded into the vague shape of a cat & covered with fondant. it has fondant ears & tail & frosting features, including claws.

detail of the cat.

jaimie says, “i’m not a sculptor, okay?” she thinks it looks like a hairless pig rat. i think it kind of resembles jaimie’s dog, wallace tucker. he’s a terrier/chihuahua mix who grew up in a meth lab. after the meth lab exploded & his original owners were hauled off to prison, jaimie adopted him.

the cat is wearing an ice cream cone birthday hat with a sparkler in it. i refused to light the sparkler because i am still traumatized from setting my hand on fire lighting sparklers at kickball last summer. so jaimie lit it.

the cake with the sparkler lit.

i feel that i should mention that this cake is enormous. & literally only six people stopped by for my “party” (which is about five more than i really expected). only four of us ate cake. so i have tons of leftovers. they’re taking up an entire shelf in my refrigerator. thankfully, jaimie is hosting a barbecue/potluck this evening, so i’m going bring the leftover cake & also all the leftover beer that has been sitting in my fridge. i just don’t drink beer when left to my own devices. i don’t drink any alcohol. that’s definitely not a bad thing, but it does make me wonder sometimes why the hell i pay for recycling service.

people singing happy birthday to me.

the day of my party was in fact charlotte’s tenth birthday. if she were a person, she’d be getting ready to enter the fifth grade! she’d be able to write cursive! charlotte shares her birthday with my niece, malachite. she’s nine. halfway to adulthood! they really do grow up so fast. my sister may disagree, since she’s the person who has had to shepherd malachite along to turning nine, but i feel like she was just born last week.

malachite was in fact born exactly two weeks before my dad died. so the anniversary of his death is coming up on july 30. it blows my mind to think he’s been gone for nine years. i had just turned 23 when he died. now i’m 32. weirdly, jared’s father’s birthday is the same day my dad died. his mother’s birthday is the same as my ex-husband’s. people are sometimes surprised that i’m so good at remembering the birthdays of people i don’t even know that well, but it’s easy for me because there are weird clusters of significant dates in my life.

i guess nomy lamm is performing in lawrence on july 30. that’s where most people i know here are going to be on the anniversary of my dad’s death. i am still mulling whether or not that’s where i want to be. it could be good to be with friends, doing something potentially fun & definitely outside the confines of my usual routine. but it might be kind of stressful.

to be honest, i don’t really feel a lot of feelings on days that are associated with my dad–his birthday, father’s day, the anniversary of his death. i haven’t felt a lot of feelings about him in a long, long time, because i guess my philosophy is to just not have a lot of feelings about things i can’t help. but i do sometimes wake up in the morning or space out while reading a book & think, “i haven’t talked to dad in a while. i should call him.” then i remember. i wonder how long a person has to be dead before that fact finally sticks in your brain.

charlotte as a baby.
my dad, about two years before he died (the second to last time i saw him).

everything is for the future

the apartment hunt continues. it is really stressing me out. i don’t like looking for apartments. i talked to one of the guys that lives in my current building, & he said that everyone except jared & i got letters from the landlord asking if they want to renew their leases or not. & that they are all planning to leave because the landlord is jacking up all of their rents. the smaller apartments are going up by $50 (about 15%) but the three-bedroom on the first floor is going up by $300–more than 30%. though the landlord was initially trying to rent it out for the increased price last year & could not find tenants. the dudes who lived there now talked him down a few hundred dollars. so maybe the landlord is just trying to get them on board with his ideal rent now that they live there.

but jared & i have not received this letter, so we have no idea if the landlord wants to raise our rent, or by how much. it would definitely help me make a decision about how seriously i should look for a new place if i knew what the landlord’s plan was for us. we’ve kind of been operating with the belief that it’s okay if we don’t find something else, because our current apartments gets the job done. but i don’t know if i will still feel it gets the job done if it costs $100 more.

so we’re looking at two places this afternoon, a place tomorrow, & a place on friday. one of the places we’re seeing today is the tiny house we already saw once last week. it’s pretty much ours if we want it, & i really like it, but jared is concerned that it’s too small. especially if we are going to be adding a baby to the mix at some point. i think it is quite small. i think it might be especially small for a rambunctious toddler. but rambunctious toddlers are still a couple of years away. in the meantime, it could be a cozy place for a pregnant lady & later a little baby to hang out in. that’s why we’re looking at it again. i have spatial issues & often think things are bigger than they are. no dirty jokes, please.

i am also learning how to drive, which is also being compromised by my spatial issues. i got my permit almost two weeks ago & have driven five or six times since then. i feel like i do a little better every time, but i also feel that every increase i experience in one skill set (like parking, or turning) is off-set by a decrease in another skill set (like braking, or changing lanes). i can’t seem to do it all competently at the same time. but i guess it just takes practice. so far the limits of what i feel comfortable trying are pretty limited. i’ll try pulling out of our garage (which is super-narrow), but i’m too scared to pull in. i don’t want to drive at night because managing anything other than the basic tasks of driving (ie, adding headlights to the mix) is too scary. the idea of ever driving on the highway scares the crap out of me (even though it was my favorite thing to do when i was 16 & learning how to drive from my dad).

i drove myself to the hospital the other day (with jared in the passenger seat, of course) for a “preconception counseling” session. just to run some tests & make sure my health is okay before i go compromising it in some significant way by getting knocked up. it was kind of weird. i was like, “i have arthritis,” & the doctor was like, “cool, we’ll sort out your medications when you become pregnant,” & i was like, “i’m not on medications,” & she was like, “um…why are you here then?” i mean, not really, but…i’m not on medication because i don’t want to bother trying something i’ll have to go off of right away because it’s contra-indicated for pregnancy. i’d hoped that an ob-gyn could give me some pain management tips that were pregnancy-safe.

then i was like, “i have vaso vagal syndrome, so i probably will not handle labor very well,” & she was like, “oh yeah, you just pass out in response to pain?” & i said, “yeah,” & she said, “that’s cool. you’ll probably just pass out in front of all the other women in labor & you’ll really freak them out,” & then she laughed this awesomely wicked laugh. i thought that was pretty cool. then she said that maybe i can just get an early epidural & not feel any pain & be awake for the labor. beats being unconscious & having to have an emergency cesarean, right? i am really not sweating the natural birth thing. if it happens, it happens. if it doesn’t, oh well. i care more about trying to be a halfways decent parent than having an idealized hippie birth. nothing against idealized hippie births. they’re cool if you can get them.

anyway! all of this is way far in the future. it’s just on my mind because i feel like everything i am doing right now is this vague, ineffectual attempt to plan for things that are way in the future. where will i live? will i be in kansas this summer? when do i really need to make the effort to pick up pre-natal vitamins? there’s not much going on that is grounding me in the moment, unfortunately.

i am thinking about making a new zine. one of the folks that distributes my zines wants to get into selling at shops & is putting together a small catalogue of some of the zines she’d like to feature in her wholesale pitch. she included “love letters to monsters”. i kind of feel like that’s a pretty cool distribution opportunity & maybe i should make a new zine in order to seize said opportunity. i keep feeling like i am retired from zines because my life is kind of boring (in a zine sense) & zine culture is something irritating & maybe i want to use my writing energy for other things. but i wonder if i will ever really quit.

car talk

so the big news is that jared & i bought a car off craig’s list. we got it from a nice topeka librarian. she was extremely organized. she provided us with all her receipts for all the work she’d had done on the car & coached us through the requirements for registration. i have never had a driver’s license, so obviously i have never had a car before, so all of this is completely foreign to me. but it seems like a pretty decent car. it’s a 2002 saturn three-door, which means it is very tiny. jared’s head brushes the top when he’s driving. the backseat was not necessarily meant for sitting, if you know what i mean. though there’s a drink holder back there that would prevent anyone from getting up too much else.

so now i need to brush up on my driving skills & get a license. my dad taught me how to drive when i was a teenager, & even enrolled me in driver’s ed. i was never a great driver. my dad went to college for elementary education, so he was a good & patient teacher. but on a few occasions, i made dumb driving mistakes that caused him to scream & curse, & then he made me pull over so he could take the wheel. these incidents undermined my confidence a bit, but i went in to take the driver’s test anyway. i failed three times before i just gave up altogether.

when i was in midwifery school in massachusetts, i decided i needed to learn how to drive for real. after all, you can’t very well take public transportation when you’re attending a birth. my friend amanda tried to teach me. we drove circles around a parking lot until i’d proven that i knew how to stay in my lane & make turns, & then we hit the open road. unfortunately, the road she chose was in southie, which is perhaps the scariest place to drive in the united states. boston drivers have a reputation & it is earned. at the time, amanda was working on a tall ship docked in boston harbor, so she suggested we drive to the harbor & check it out. she directed me to turn into a parking lot, which i did, & we slowly approached a security gate. i realized that at the gate, we would have to provide ID, & my ID did not entitle me to behind the wheel of a vehicle. i didn’t even have a learner’s permit. so we had to get the hell out of there, which involved pulling a sloppy & conspicuous U-turn & driving over a decorative flower bed & a curb before re-entering the flow of south boston traffic. that was the last of my driving lessons with amanda, & that was my last time behind the wheel of a vehicle.

after that, i figured i just wasn’t meant to drive, & that i would simply live out my days in a large american city with decent public transportation. & then jared was accepted into the doctoral program at the university of kansas, & now i live in kansas. a person can probably live in lawrence without a car…but the city doesn’t make it easy. there’s a public bus system, but it doesn’t service huge swathes of the city, & the buses only run about once an hour. & they stop running at around 7pm. if i was really badass cyclist that didn’t mind biking four miles in scary bike-malicious traffic in order to see a movie or something, i could get by without a car. my apartment is near downtown, the library, my bank, the post office, a grocery store, & a laundromat. what more do i need? but now the grocery store wants to re-model, so they will be closing down for ten months in 2011 while they add such amenities as a starbucks & a sushi bar. technically, we could walk to the next-closest grocery store, which is maybe two miles away. but a weekly four-mile round-trip on foot in a dicey proposition in a state that regularly hits triple-digit temperatures in the summer & gets multiple feet of snow in the winter. & at least half of the walk to the grocery store would be along streets that do not have sidewalks or street lights.

so we threw in the towel & bought a car. it kind of feels like giving up, but it will make things a lot easier in certain ways. walking to the grocery store takes about twenty minutes. driving there takes two minutes. jared will have a car available when he has to go out of town on research trips. we can drive to friends’ houses instead of having to arrange rides (sometimes we get invited to stuff way out in suburban lawrence–way too far for me to bike even when i feel like biking). if we end up at a shitty party, we can just leave, instead of dragging away a ride that may be enjoying him/herself. we can visit friends in kansas city & columbia at our leisure, rather than asking around for rides from other people that may be going. & we can transport our own selves to their airport.

plus, there’s some talk of having a kid in the next couple of years, & while a child does not necessitate a car, i don’t see myself wanting to walk to pre-natal appointments at the hospital (about two miles away) when i am eight months pregnant. & i am not such a hardcore anti-car person that i would actually walk my baby home from the hospital/birth center after it is born. though i have heard some tales of people doing exactly that.

it’s quite the threshold in adult living. though it still all seems very hypothetical to me, since i can’t drive the car. apparently i have to get a learner’s permit, which i can’t do until i get a copy of my birth certificate. (i used to have my original birth certificate, but it was stolen a few years ago.) once that’s squared away, i can practice driving until i feel competent enough to take a driving test, & if i actually pass this time, i can go cruising for hotties to my heart’s content.

i am disabled

i had a pretty difficult conversation today in which a good friend told me that she is jealous of the security my disability money provides. for those not in the know, i have been on disability since early 2003. i’m one of those lucky folks who was approved the first time i applied. i get it for both physical disabilities & mental health issues. my mental health issues are mainly anxiety & depression, both of which i have learned to manage pretty well (especially the depression), but which still affect my life in various ways pretty much every day. i have a much more difficult time managing my physical disabilities.

i have some weird birth defect wherein i was born with an incomplete spine. i am missing a few vertebrae in my lower back. i also have fairly severe scoliosis. this may be related to the missing vertebrae. my spine may have learned how to curve over time in order to support the uneven distribution on weight along my back due to the missing vertebrae. on top of this, i injured my back really seriously when i was 18, in a workplace mishap. i damaged a lot of nerves in my spine & have some fairly minor (comparatively) partial paralysis in the right side of my body. it mostly affects my right arm & my neck. i went to physical therapy to recover motion & passably normal function in my leg. i was in physical therapy for months, but thirteen years later, i can walk pretty normally. but on top of all of this, i developed arthritis, which has spread all over my body. ten years ago, it was pretty centralized in my back, hips, & knees, but now it’s in my feet, hands, arms, neck, & has recently spread to my shoulders. the arthritis means i live with major amounts of chronic pain every single day. some days are worse than others. i’ve had days when i couldn’t walk, move my neck, or lift my arms. those days are fairly infrequent. my daily battles involve things that other people don’t think twice about. it’s difficult for me to hold & use utensils, button a jacket, & write things by hand. it’s very painful for me to sweep a floor. often, when i wash dishes, my hands sometimes lock into claws & i can’t move them. if i’m sitting on the couch reading a book, it’s difficult for me to hold the book open. little things like this cause me significant amounts of pain, which is only becoming more severe & widespread as time goes on. & i’m only 31. there’s no cure for arthritis, so i have to make my peace with the fact that these problems aren’t going away, & will in fact only get worse.

when i was initially diagnosed, my orthopedic specialist said i would probably be in a wheelchair by the time i’m 30. clearly, he was wrong about that. but we’ll see what the future holds. i also have to deal with the fact that my arthritic joints are more prone to injury, & take longer to heal if they are injured. seven years ago, i sprained my ankle tripping on a rock in my backyard. i had to wear an ankle brace & walk with a cane for six months. & i was only 24 years old! it was no fun to roll into a zine fest leaning on a cane.

chronic pain is pretty much impossible to describe to someone that has never experienced it. i have had some kind of chronic pain somewhere in my body every single day for the last thirteen years. sometimes, it’s so bad i cry. there have even been times that i have thought about killing myself just to make it go away. (this was especially a big problem right after i hurt my back, when i couldn’t move my right leg at all & couldn’t get out of bed for months on end.) i’m a lot more okay with it now, just because i’m used to it & have developed some skills for working around it, but it definitely sucks. being on disability has literally saved my life. i can’t imagine what job i would actually be able to hold down when my physical limitations are combined with my mental health issues.

i was approved for disability when i was 22, & the government determined from my application that i became chronically & permanently disabled at age 18. therefore, when my dad died right after i turned 23 & i got divorced a year later, i became eligible for the disabled adult children of deceased parent benefit program. this enables me to collect disability insurance as well as my dad’s social security guarantee. the thinking is that a parent would financially support his/her disabled adult child if s/he were alive to do so. in his absence, the government gives the disabled adult child the social security benefits the parent would have collected upon retiring. disability insurance alone is a very meager income. it would be a huge challenge to live independently on it. i did it for six months while i was waiting for my divorce to be finalized. $525 a month, & my rent alone was $400. you do the math. adding my dad’s benefits to the mix means i am able to support myself independently–although i have to live a fairly frugal lifestyle. which i’m okay with, because i am/was(?) a punk & that’s how punks roll.

of course, this is a fixed income. if i find one day that it’s not enough money to get by, i don’t have any options. i can’t apply for a better-paying job. i can’t further my education in hopes of a professional career & the attendant boost in income. this is it. & there are other caveats as well: if i ever decide to live outside the united states, i lose my disability money altogether. if i ever get legally married, the government will pull the extra money i get from the disabled adult child program & i’m back to just my $525 or so in disability money. i would have to rely on my partner to support me financially, which is a lot to ask of someone, & which is something that makes me very uncomfortable. i’m not sure what the rules are around having assets (ie, if i were to sign a mortgage, even if i wasn’t the sole person responsible for paying down the mortgage). i’m not sure how social service programs i may be eligible for if i were to have a child (ie, WIC) would impact my social security income.

so, you know, it’s not a perfect system. but it works for me for now. not having to sweat the bills & look for a job definitely goes a long way toward helping me keep my depression & anxiety in check, & being able to be a homebody definitely enables me to take the time & space i need to deal with my chronic pain issues. for example, i can chill out at home & sleep or take a bath if the pain is really intense, rather than forcing myself out to my job. toward the end of my life as an employee, i was taking a lot of “sick days” that were really “too much pain to get out of bed” days. i don’t have to worry about that stuff anymore. & my schedule is now flexible enough to do self-care things like water aerobics classes, out-patient surgery to cauterize pain-transmitting spinal nerves, etc, without having to take time off.

okay, back to the situation with my friend. i see very little in my situation to inspire jealousy. her main point, repeated over & over, is that it’s a privilege for me to be able to make ends meet without sweating my next paycheck (though i’m always cognizant of the fact that the government could pull my benefits any time they want, & i am subject to regular, extremely arduous, review processes). is it a privilege for the government to provide a basic income to people who cannot provide an income for themselves? i honestly wouldn’t call that a privilege. i think it’s pretty much the least they could do. i’m not one of those people who thinks “privilege” is a dirty word & freaks out if someone says i have it in some way…but considering that i get this money because i am disabled, & my disability is a pretty huge detriment to my life, for which i have faced some very clear-cut examples of prejudice & oppression…i definitely think “privilege” is the wrong word to use.

in my years of experience being on disability, i have had several people in my life who seemed jealous or resentful of my guaranteed monthly income. a few people voiced their opinion that i am squandering my money if i buy myself a treat with it (ie, cute shoes, a decent computer). i see this as paternalistic nannying bullshit. what, a person can buy whatever the fuck useless or frivolous doodads they want if they go out & earn their money everyday at a job, but someone like me should grovel & be grateful for whatever dregs they can get? these are usually people with a fair chunk of money & financial security, & some unchecked ideas about what poor people deserve. key word: deserve. these people tend to be very hung up on who deserves what.

the other kind of person in my life has been the person that is struggling to make ends meet themselves, maybe by hustling away at some self-employment, or at a low-paying retail or food service job. these people are jealous that i make just as much money as them (ie, not much) without having to leave the house. they seem to think i have a pretty sweet gig going, & sometimes they passive-aggressively congratulate me on “snowing” the government into giving me money. believe me when i say i am not snowing anyone. live a week with the pain i live with every day & see if you think i fooled anyone into declaring me disabled. these people tend to have more jealousy & resentment around my income & financial situation. they may say something like, “going to work makes me really anxious, but you don’t see me looking for a hand-out.” & i say, “why the hell not? if you really think your anxiety constitutes a serious disability that negatively impacts your life on an ongoing basis, apply & see what happens.”

the bottom line is that once these opinions bubble to the surface, the friendship usually doesn’t last too long. i have had really, really bad experiences around this issue, & i think the bottom line is that someone who is jealous of my perceived financial stability due to my disability income is a person who does not take my disability seriously. it is NOTHING to be jealous over. if i could wake up everyday feeling totally healthy & pain-free & have my dad be alive again, i would gladly work forty hours a week, even if it was at chipotle or something. but it’s just not an option. & at this point in my life, my pain & my physical limitations are serious enough that i NEED my friends to take my disability status seriously. it’s a huge part of who i am as a person, & making jokes about it or being jealous basically amount to minimizing a hugely significant & difficult aspect of my existence.

so now i’m dealing with it again & i’m pretty upset. i really thought i’d gotten to the point where i was making good choices about my friends & was only sharing my disability status with people who could be trusted to fully respect that. i like to think of myself as a good judge of character, but…this happened. i have never ditched a friend SOLELY because they made some fucked up remark about my disability…but usually the fucked up remark has been the first indication i’ve had of a toxic stream slowly killing off the friendship. i am really bummed to think that something like that could be happening again, & i am trying every way i can to try to understand this person’s perspective & give them the benefit of the doubt. but personal experience has shown me that not taking this remark seriously as a potential cancer in the friendship will only lead to more heartache down the road.

i guess i am writing this for anyone who may be reading who has a friend struggling with a mental or physical disability. i am saying: take that shit seriously. it’s not a fucking joke & it’s nothing to be jealous of. if your friend’s condition is serious enough that the government has recognized it & is providing for their basic survival, that is a big fucking deal for your friend. they probably have days where they feel unbelievably shitty about the fact that they can’t provide for themselves–even just by washing dishes at noodle & co. plus, they’re dealing with all the restrictions the government places upon them in exchange for their survival money. there’s a decent chance that that money is the only reason your friend is still alive. don’t resent them for it, don’t waste your time being jealous of them. trust me: there’s nothing going on with them that you want for yourself. if they could trade their money to have your health, they would probably do it. even if your friend doesn’t often talk about their disability or make their disability-related limitations obvious to you, they still deserve respect as a whole person, & their disability is part of their wholeness. be cool.