A Cure is Unnecessary to My Happiness

 Please believe me when I say that. 

I DO NOT NEED A CURE FOR EPILEPSY.

Is epilepsy inconvenient? Yes. Is epilepsy frightening? A little bit, I guess. Is epilepsy painful? Sure, but I’m pretty certain the medications, the surgeries, and the VNS that didn’t work have caused me more physical and emotional pain. 

But if I don’t want a cure, what could I possibly want? Why do I even write about epilepsy? This one is simple. I want and desperately need accommodation. I want and desperately need a society where disability isn’t considered a tragedy. I want books in which disability isn’t a metaphor or a theme, in which the disabled body is simply a body—a body signifying nothing more nor less than any other body. I want people not to stare with pity or fear when I have a seizure. I’d also prefer they not avoid eye contact. I would like to be helped when I have a seizure, sure—that’s common sense—but I’d prefer not to be looked down upon or condescended to. I have a brilliant mind. I’m not afraid of saying that. I can tell when people are treating me with condescension rather than compassion.

I want and need businesses, teachers, employers, friends, and families to respect the needs and desires of people with disabilities. I want them to see us as fully human—not the nuisance that’s asking you to put in an elevator or wheelchair ramp and not the inspiration on the Jerry Lewis Telethon. I really, really, really need the Jerry Lewis Telethon and all things like it to go away forever. I need all y’all non-disabled folk to realize that the posters you have with people in wheelchairs or with prosthetic limbs featuring heartrending quotes in horrible fonts are a fooking insult. We aren’t here to motivate you or make you feel better about your lives.

I need public transportation with reasonable hours and fares and bus stops that aren’t on crumbling sidewalks or in inaccessible areas. I need affordable housing. I need affordable medical care. I need specialists who are available more than once a year. I need pain management that isn’t treated with suspicion. 

I need everyone to realize that I love my disabled body and you can stop praying for me now. At the very least you can stop telling me that you’re praying for me. You can believe me when I say things are fine like this.

You can stop thinking I’m exceptional because I’m happy. A lot of people are happy, and the epilepsy was never an obstacle to my happiness. A lot of things related to it were, but those were more based on cultural expectations and my own mistakes about buying into the narratives surrounding disability. I know better now. I’m happy. I’m tough. I know how to get things done.

A cure would probably be nice eventually, but right now I’d really like open minds and hearts. I’d like to see accommodations available to all people with disabilities. I’d like to see things like medical care, affordable housing, and public transportation considered an essential part of the infrastructure of this nation. I’d like my contributions to society to be acknowledged rather than ignored simply because they aren’t part of the Ayn Rand/Fox News necessity checklist. I’d like the voices of people with disabilities to be part of the canon. I’d like our stories to be vital. I’d like it if I didn’t have to be the one making non-disabled folk comfortable with my bodily difference.

I’d like to never again hear an ableist comment. I’d like it if I never had to explain why they’re offensive. It would be so nice if the concept of basic politeness wasn’t met with a sneer and random mumblings about “censorship” or “political correctness run amok.” It would be lovely if (and for true equality it is essential that) civil rights movements considered the rights and needs of people with disabilities, if we weren’t considered secondary to the movements in which we participate, but our rights were just as essential to the success of these movements as those of any other group.

I’d give my first born child to never hear eugenicist comments from people who consider themselves liberals.

All of these things matter more to me than a cure. And all of these things will do more good for PWD and society as a whole than finding a specific cure for a specific disability. Funny how that works.

X-Posted from my tumblr: http://epileptiwhatever.tumblr.com/post/105019504453/a-cure-is-unnecessary-to-my-happiness

Hey Everybody

I'll be adding a number of posts I wrote on Tumblr when I was away paying no attention to blog stuff and dealing with life stuff like school and roommates and people. They should be showing up over the next few days. Enjoy the influx.

Passing

A while ago I had a conversation on FB that led me to realize some things about myself that hadn't occurred to me before.  The convo was about women's health/invisible illnesses/the like, and I mentioned that whenever I go to an appointment of any kind, I get dressed up.  No, I don't wear my Sunday best, but I'll put on a pair of slacks, a nice top, and usually a blazer.  I do this because I want to be taken seriously.  I already have three strikes against me: I'm female, I'm disabled, and I'm low-income.  If I went to my appointments in clothes that actually reflected the way I feel physically (probably yoga pants and a sweatshirt), I would be dismissed as another "parasite on society."  So even when I'm sick, I dress up, I put on makeup, I do something with my hair. I do this so doctors, teachers, therapists, social workers (people who are supposed to have my best interests at heart) will take me seriously.  And it works.

So I was a little bit shocked when a friend commented, "Spinster, you're passing."  I had never thought about it like that.  But it's true. I'm a disabled, low income woman passing as an able-bodied, middle class woman so people will take me seriously.  So people will think I've got my shit together.  I practically purr every time I hear a medical professional describe me as high functioning.  A high-functioning epileptic who has three seizures a week and is somehow managing to hold it all together.

The thing is, though, I don't feel high functioning.  I don't feel like I'm holding it all together.  I feel like I am putting on armor of pretty clothes and makeup so the people I know won't see my weak spots, won't see that a lot of the time I am barely functioning, exhausted, and living off coffee.

I'm extremely lucky.  I live in a city with many, many hospitals and medical services available.  I have a therapist who has taught me that a lot of the things I thought were flaws in my character are simple consequences of having brain damage. I'm attending a school where I'm treated extremely well by teachers who are amazing.  I am finally starting to see the life I dreamed of, the life I always thought my disability would make impossible.

But I am not the face I show the world. I'm just passing.  And a part of me knows that I will be uncovered soon enough, that some doctor or teacher or fellow student will someday say, "You aren't what you've been telling us you are.  You are not that pretty middle class lady."  I don't feel like the pretty middle class lady.  I feel more connection to the kid on the bus with the studded leather jacket and pierced everything than I do to the women who look and dress and act like me.

Something about this makes me very sad.  I don't really want to be the persona I put on each day.  I want to wear my scars proudly and let the world see what I am.  But I'm a coward (that's also part of what I'm hiding).  I'm afraid that they'll see who I am and decide I'm worthless.

Troubled Mind

It has been a rough couple of months.  I broke my foot shortly after my birthday.  I was staying with a friend at the time, who'd offered to let me housing in exchange for help with her ailing mother, house sitting, and rent.  Searching for a new home on a broken foot when you also have no car is really, really hard.  I applied for every disability housing unit in the city, but of course none were available.  Because there are never disability housing units available.  It's like that is written into the law:  "make disability housing impossible to find.  That will somehow force the disabled to have the motivation to no longer be disabled."  Honestly, the whole thing made me feel like I was stuck to the bottom of someone's shoe.


And then, of course, things got worse.  My doctor and I agreed that I should wean off of Topamax (which I've been on for over five years) and onto another drug because Topamax makes me feel fuzzy and stupid and made going to school almost impossibly hard.  Switching meds is awful.  I went through days of dizziness and puking and insomnia.  I felt like my nerves were on fire.  All I could do was cry.  Meanwhile, the friend I was staying with told her mom (whom I'd been caring for) that she didn't want me to live with them.  That hurt--not so much the not wanting me there, I get that people need space and sometimes are incompatible, but the fact that she relayed the message through her mom and never talked to me about it at all.  The depression hit like a brick wall.  I felt shattered.  For the first time in years I just didn't want to be alive.


The thoughts just kept running through my head (my head that was all messed up and destroyed and running on overdrive trying to deal with functioning without a med I'd been taking for over five years):  Why should I be here?  There's no place for me to even live.  If I died now, it wouldn't matter--it would just be one fewer person in that line waiting for a home.  It would be one fewer person who has to be on SSDI and Food Stamps.  I know how people feel about me.  I see it in their FB feeds every day.  We're leeches, we're drains on society.  Society doesn't want us and is better off without us.

It had been a long time since I had these sort of thoughts.  I didn't know why I was having them.  At that time it didn't occur to me that switching meds was affecting my emotions and my self-perception.  All I knew was that I felt terrible.  I felt unworthy and I felt unwanted.  I didn't know who to talk to.  I couldn't think of a friend who'd want to help me.  I felt so alone.  I finally called a suicide hotline.  I didn't get any real solutions, but at least there was a voice talking to me, telling me that I mattered.  At least I eventually felt calm enough to go to sleep.

It occurred to me later that it was the meds that were causing such trouble for me.  I was able to contact my doctor and arrange a solution on that front.  Shortly thereafter I found an apartment (funny how the bleak can suddenly turn hopeful).  I've moved my things in.  I'm almost done unpacking.  I start school tomorrow.

Epilepsy and other neurological disorders--and even the meds that treat those disorders--can wreck havoc on our emotions.  These disorders can make your brain lie to you.  Please, please, please don't believe the lies.  Somewhere someone cares.  These things are only temporary.  Hold on for an hour, a night, a day, a week, a month.  Hold on until someone can help you.  Hold on until you can figure it out.  Knowing that there is a solution is a major step and it brings so much hope.  Please, please hold on.

Beloved Flaws

In the past few months it would be fair to say that I haven’t had the heart to write here.  Events both personal, political, and public have had me hunkered down with no desire to show my face.  I’ve wanted to express, yes, but I haven’t had the courage or the energy.  Just reading the newspaper feels like too much some days--reading the monologue of others’ tragedies, then going to the comments for the dialogue, the daily debate about who deserved what.

I haven’t had the heart.  More accurately, I haven’t had the brain.  Certainly my seizures are doing their part to make stress even more stressful (I’ve had an uptick thanks to some physical injuries and life changes).  I’m trying to find a place of peace with that.  I’m trying to love my flaws, even the most deeply flawed part of me, my brain--the misfiring control center that shuts down this machine from time to time.  The neurons that plunge me from consciousness to un, that plummet me from mania to depression, that play the same thoughts over and over again like music from a deranged ice cream truck.  How can I love this thing?

But how can I love another if I can’t love my most flawed parts?  How can I keep myself from picking away at the ones I value when I’m forever digging at my own sores and wounds?  

So I’m going to do it.  I’m going to love the parts of me that I have hated, that I’ve thought were unworthy, that I’ve been told were inferior or ugly or wrong.  I can’t sit around and hope that someone else will love me and make me feel good.  It’s my responsibility.  It’s my job.  No one else is going to do it, so I will do it.

People With Mental Illness as "The Other"

     Over the last five years Andrew H has worked as Job Coach and a Vocational Rehabilitation Counselor. He is one class away from earning a Master's Degree in Rehabilitation Counseling and will sit for the certified rehabilitation counseling examination later this year.  Mental and emotional illnesses and learning disabilities run in his family.  Though it occurred nearly 35 years ago, he still remembers going to "special class" for having what is now called dysgraphia.  A version of the following post was submitted for a grade in his "Working with People with Severe Mental Illnesses" class.    

On December 14^th, 2012, our nation was horrified and sickened by the news that a gunman named Adam Lanza had invaded Sandy Hook Elementary School in the small town of Newtown, Connecticut, killing 20 children and 6 faculty members before committing suicide.  It was later discovered that he had also shot and killed his mother.  Almost immediately it began to be reported in the news that the 20 year old Lanza had Asperger’s syndrome or autism.  Many began to speculate that perhaps this played a role in his committing the crime.  When reporting its version of the events, The National Enquirer, ever the scion of responsible news reporting, carried the headline, “Inside The Sick Twisted Life Of School Mass Killer – What drove crazed gunman to slay kids” (emphasis mine, “Inside the sick twisted life of Adam Lanza,” December 27, 2012 www.nationalenquirer.com/true-crime/world-exclusive-inside-sick-twisted-life-adam-lanza ).

            After the shooting, the National Rifle Association remained silent for a week.  Then on December 21, 2012, the NRA held a press conference which was really not so much a “press conference” as it was a “rant to the press.”  The main speaker at this “conference” was NRA executive vice president Wayne LaPierre.  In his speech LaPierre blamed everyone and everything except guns and gun owners for the Sandy Hook shooting.  Among other things he blamed the media, violent games, violent movies, and the government.  For the purpose of this blog post, I wish to discuss how LaPierre demonized and depicted persons with mental illness in his speech.  I will focus on the following two statements made by LaPierre that characterize or I should say stigmatize and mischaracterize people with mental illness:

Politicians pass laws for gun free school zones, they issue press releases bragging about them. They post signs advertising them. And, in doing so, they tell every insane killer in America that schools are the safest place to inflict maximum mayhem with minimum risk….How many more copycats are waiting in the wings for their moment of fame from a national media machine that rewards them with wall-to-wall attention and a sense of identity that they crave, while provoking others to try to make their mark. A dozen more killers, a hundred more? How can we possibly even guess how many, given our nation’s refusal to create an active national database of the mentally ill? (emphasis mine,  LaPierre, W., Keene, D., Hutchinson, A, para. 14, 22 http://articles.washingtonpost.com/2012-12-21/politics/36018141_1_mayhem-with-minimum-risk-nra-wayne-lapierre)

            I believe that the implications of LaPierre’s statement, as well as his seemingly general attitude about people with mental illness, is very serious.  In an attempt to deflect blame from guns and gun users, the NRA through LaPierre has played the old, “‘Insane’ people are dangerous” card that has too often been the plot of our stories, myths, and urban legends.  It doesn’t take much searching to find movies, TV shows, books, and comics where the villains or dangerous characters have a mental illness.  Hannibal Lecter and “Buffalo Bill” in “The Silence Of The Lambs,” Annie Wilkes in “Misery,” Randle McMurphy and others in “One Flew Over the Cuckoo's Nest,” Norman Bates in “Psycho,” Leatherface in “The Texas Chainsaw Massacre,” Jack Torrance in “The Shining,” Carnage in “Spiderman,” this list could go on and on.  The website “Villains Wiki” actually has a category called “Villains With Mental Illness” which lists 774 villains with mental illnesses from popular movies and stories categorized into 21 different subcategories from “abusers” to “villains with dual personalities” (Villains Wiki, 2013 http://villains.wikia.com/wiki/Category:Villains_With_Mental_Illness ).     

Many have written or commented on the idea of making society’s villain’s members of “the other.”  I particularly like the following quote from Carolyn Kaufman, who is clinical psychologist:

Mental illness and Monstrosity are often clumped together for two reasons. First, mental illness can be scary, and we want to believe we would never behave that way, no matter what. Second, we use psychological terms to try to understand cruelty and hatred, and it's much easier for the average person to equate "sociopath" with "monster" than to accept that circumstances contributed to that person's behavior...and could conceivably have done the same to us if we'd shared them. 

(“Creating wonderfully wicked villains”, para. 13. http://www.movieoutline.com/articles/creating-wonderfully-wicked-villains.html )

Even before the shooting and LaPierre’s outrageous and civil-rights defying suggestion, people in our society with mental illness faced serious issues and consequences of such labeling and stigmatizing statements.  Donna Falvo, author of “Medical and Psychosocial Aspects of Chronic Illness and Disability,” defines stigma as “individual feelings of shame due to disapproval of others and guilt resulting from being discredited or devalued” (p. 22) and a 2005 study by Rüsch, Angermeyer, and Corrigan explained that stigma exists when elements of labeling, stereotyping, separation, status loss, and discrimination occur in power situations that allow these processes to happen.  Further, the study by Rüsch et al. discussed the damaging misconceptions and harmful results of stigma towards those with mental illness.  Some of these misconceptions were that people with mental illness, “are homicidal maniacs who should be feared;…are rebellious, free spirits; or (that) they have childlike perceptions of the world”.  Rüsch et al. also found that people without mental illness often believe that people with mental illness are to be feared and excluded and, “kept out of communities,” and that they are to be seen as “irresponsible” and therefore need to be cared for and have others without mental illness make their decisions for them.  As a result people with mental illness are less likely to be hired, have apartments and homes rented to them, and are more likely to be blamed for violent crime (Rüsch et al., 2005 “Mental Illness Stigma: Concepts, Consequences, and Initiatives to Reduce Stigma,” in European Psychiatry, 20, 529-539).  And of course, people with mental illnesses also get to be our bad guys and take the blame for most of what goes wrong in our society.

By now you can probably tell that I believe that LaPierre and the NRA, and any who believe as they do about people with mental illness, could not be any more wrong.  In an attempt to be reader friendly, I will not take the time in this blog post to provide lots of documentation, but many studies have been conducted that show that people with mental illnesses are more likely to be victims of violent crime than they are to commit violent crimes.  Also, studies have been done that have shown that people with mental illnesses and no history of substance abuse are no more likely to be violent than people without mental illnesses (see Elbogen and Johnson, 2009 “The Intricate Link Between Violence and Mental Disorder”, in Archives of General Psychiatry, 66, 152-161).  We as a society need to stop demonizing people with mental illnesses and start including them in our society.  We need to stop making them our “go to” villains and we need to stop using them as pawns in our political battles. 

I would like to wrap up my thoughts with a quote from an op-ed that was written by Lollie Butler and published in the Arizona Daily Star on January 15, 2013.  Butler wrote:

There is a bloody war being waged in America; gun advocates versus those who would ban guns. This "civil" war may go on for a long time.  Meanwhile, those suffering from mental illnesses unfairly shoulder the blame for atrocities committed against the innocent.  This is an unreasonable situation. Armed persons firing into crowds, whether at schools or shopping malls, defies reason and causes all of us to feel vulnerable. It also takes its toll on those with mental illnesses. Words like "crazy" and "deranged" fly across the front pages, and the mentally ill in treatment, saddled with severe funding cuts and ongoing social stigma, take it on the chin. 

(“Let's Stop Blaming the Mentally Ill,” para. 1-3 http://azstarnet.com/staff/lollie-butler/guest-column-let-s-stop-blaming-the-mentally-ill/article_ec8019a1-0b0d-5e6a-97d7-a99a17e3cea3.html )          

People with mental illnesses have rights just like the rest of us.  They are everywhere.  They do not deserve the treatment that society, as demonstrated by LaPierre and the NRA, is giving them.  People with mental illnesses are not “the other,” they are our spouses, our lovers, our daughters, our sons, our parents, our siblings, our neighbors, our roommates, our co-workers, and our friends.  It is time to embrace them as such, to embrace and confront our own weaknesses and fears, and to put our old demons permanently to rest. 

Managing the Illness

When I was diagnosed with epilepsy, I knew nothing at all about managing epilepsy.  I didn’t really understand that there was anything to managing it beyond taking my meds.  My doctor didn’t tell me much.  All I learned was that I needed to take my medication, that I couldn’t drive, and that people shouldn’t put anything in my mouth if I was having a seizure (people still have misconceptions about that last one).  And, shame on me, I didn’t bother learning anything about managing my illness.  So I went through quite a few years during which I was constantly damaging myself during seizures and suffering the consequences of the anger and depression that came along with my sudden disability status.

I’m going to share with you what I learned because I don’t want anyone else to have to learn the hard way.  Learning the hard way really, really sucks.

For a very long while, I didn’t even think about the dangers posed by my immediate environment if I were to have a seizure.  In an almost unequaled act of idiocy, I had an open trunk with a metal edge beside my bed.  Of course during a seizure I fell off my bed and hit my face against that metal edge, and because my head likes to do lots of swinging back and forth during severe seizures, I hit it repeatedly.  For a couple of weeks, I got to live with horrified stares when people saw my face covered in terrible cuts and bruises.  I learned enough from this to move the trunk away from my bed, but I still didn’t think very much about the risks posed by my environment.  I can’t even remember all the things I hit my head on and damaged myself with.  But eventually I learned.

I learned to sleep in a double bed instead of a twin because I was less likely to fall out of a double bed during a seizure.

For a while, I brushed my teeth in bed because my seizures were orally triggered and having a seizure in the bathroom is hell (tile, ceramic tubs, sinks, toilets--lots of places to damage the old noggin).

I learned to avoid spending too much time on stairs. Falling down stairs during a seizure is absolutely horrible.

I learned to look for apartments with carpet rather than wood or tile floors.

I learned that it’s a good idea to tell friends and teachers that I have seizures and let them know what to do if I have a seizure.  This is something I don’t really like to do.  Sometimes I hate it.  But it is the wisest course of action.

I learned to stand up for myself when people thought that my disability made me weak, stupid, or incapable.  And I learned to do it in a diplomatic manner.

Now I’m going to address the emotional side of the disability issue, and how I learned to deal with that.  Because there is always an emotional side, and it always needs to be managed.

As I’ve said before, I was angry and depressed when I got my diagnosis.  For a number of years, I was suicidally depressed.  I’m sure part of this was because of the meds.  Seizure meds are well known for causing depression.  But I also know that a lot of it was because I saw the change from “able-bodied” to “disabled” as an ending.  I thought I didn’t deserve it.  I thought my dreams would die.  I didn’t want to accept it.  I was very angry.  I lashed out.  I lashed out against myself.  I lashed out against my body by starving and hurting it.  I lashed out against my family and friends--the people who loved me most and who actually were there for me during this horrible and bleak time.  I am so ashamed when I remember the pain I inflicted on them.  I love them so deeply, and they love me, but I hurt them.

Depression is a master deceiver.  It affects us viscerally.  It changes the way we see.  The world literally appears darker and gloomier.  I was trapped in depression.  I was paranoid.  I was afraid.  I was angry.  I could not feel love.  Looking back, I can see and understand how much love I was receiving.  But at the time, I could not feel it.  It’s like there was a wall around me, and the love could not make it through the wall.  So I lashed out.  I had no idea what to do.  I had no idea how to react.  I only knew I was in pain.  And I needed someone to stop the pain because I didn’t know how to do it myself.  And when no one would stop the pain for me, I grew angry.  I yelled and screamed and cried and accused.  And nothing got better.

Somehow, I don’t know how, I started to get better.  I will give myself credit for working hard.  I went to therapy for about ten years.  I recovered from a severe eating disorder.  I started to learn about my triggers and how to control myself.  I remember the turning point.

I was on Ambien shortly after it came out, before the public knew about all the terrible side effects.  I was living (somewhat happily, I thought) with a set of roommates over the summer between semesters at school.  Then one day my roommates packed up and left.  I was called to the dean’s office, where I was told I had misbehaved horribly.  The dean listed off a set of accusations, telling me that my roommates had informed her that every night my actions toward my roommates were bizarre and unsettling.  I was told to go home.  I was no longer welcome in student housing, and I was on probation at the school.

I was crushed.  I didn’t remember anything I’d been accused of.  It didn’t even sound like me.  I thought I must have lost my hold on reality completely.  I moved back in with my parents.  One night I looked at my bottles of pills and contemplated taking all of them then going downstairs and climbing in the bath.  It would be easier.  It would be easier for everyone.  I didn’t want to be crazy.  I didn’t want to be a drain on my family.  I didn’t want them to blame me.  I held the bottles and thought about how I would do it.  It was more and more appealing.

And then I thought about my brother.  I knew he’d be the one who would find me.  And somehow I knew it would destroy him.  I felt more certain about that than I’ve felt about anything ever.  I loved my brother more than anyone in the world.  Even in my unreachable depression where it was hard to love anyone, I loved my brother.  I went downstairs with the pills and gave them to my brother.  I asked him to keep them for me and only let me take them when they were scheduled.  I hate that I burdened him with that, but it was a lighter burden than the other.

The next day I checked in to the hospital.  We soon discovered that the Ambien that was causing the hallucinations.  I stopped taking it and never had an event like that again.

But this was when I started learning that I needed a plan for my depression.  This was when I learned that I couldn’t always trust my own perceptions, that sometimes my brain lies to me.  I learned that when I can’t trust myself, I need to let someone else take over.  I learned that I can’t let things go too far.  I learned that it is ok to go to the hospital and figure things out with the help of the doctors and the staff.

Since then I’ve learned a lot more about controlling my temper (my fuse used to be so short).  I’ve learned that I can walk away from a fight and calm down.  I’ve learned that when I’m angry or hurt, it helps to write things down and get my thoughts in order.  That way, when/if I do speak to the other person involved, I can be calm and coherent.  I’ve learned to have someone I trust who will listen to me vent.  I’ve learned that being angry doesn’t make me bad, it just makes me human.  It is ok to be upset about things.  It’s ok to give voice to my anger.  It’s not ok to hurt people with my words.

I get blue like everyone else, but I haven’t had a major depressive episode in five years.  This is in part due to good fortune, but I’m also certain that it is because I’ve had amazing therapists who’ve taught me to look for signs of impending depression and take steps to keep that depression from taking hold.  I am so fortunate.  I am so blessed.

I know I’ve spoken particularly about epilepsy and depression here, but I hope that these things can be applied to other disabilities and/or illnesses.  We all have to deal with flaws in our construction.  We all have to learn how to manage our bodies and minds so they function as well as they can.  Some of us have greater issues to deal with, but we are strong.  We can do this.