Monday, May 01, 2006

Blogging Against Disablism

Blogging Against Disablism Day

Some people only consider physical disorders and disabilities to be real problems. I hate the mental/physical dichotomy. I hate the way we deal with "mental" disorders. My problems arise when my brain seriously malfunctions. Isn't the brain physical? Don't brain malfunctions deserve to be taken seriously?

***May be triggering for people with depression.***

I am writing this for all the people who think or say "Well, everybody gets depressed" when they learn you are suffering from depression. Everyone feels down in the dumps sometimes. Clinical depression is a different beast.

When I get sick, it's as bad as it can be. My brain only does severe depression, it doesn't mess around with mild or moderate depression. The cognitive impact is huge. I lose the ability to read. Intelligent and challenging books are taken from me, but so are short essays, and low-level magazines. I can't get through a paragraph. As I read, I forget what I've just read, so by the end of the paragraph, I don't know what's going on. I try to watch TV, but I can't follow what's happening. TV shows are beyond my grasp. It hurts to write that I can't process stupid TV shows.

Therapy, when I need it most, is useless. I try to hang on my therapist's words, but after a few seconds, I've forgotten what she was saying. So she has to repeat it, again. I try to convey what I'm feeling or thinking, but the same thing happens. Mid-sentence, I have no idea what I was saying. This happens every time I try to talk, I think. My husband, my psychologist, and my psychiatrist are used to both my terror and my rage. "I don't know what I just said!" "What did you just say? Maybe it would have helped!" Everything is spoken in desperation.

I tend toward hyperactivity when I'm well. I'm the one who can't sit still, who plays with any object within reach, who fidgets, who has to get up and move. When I get sick, that energy vanishes. I sit still for hours. People who know me can't believe I could hold still that long. I hold still, very still, and stare glassy-eyed at the floor. I have a minor problem with drooling, but I don't care. Everything hurts, and I sleep for 16 hours a day. People comment that they'd give anything to sleep 16 hours a day. No you wouldn't, not when it's out of your control, and happens every day for months. When my psychiatrist came to call me back to her office, she said later that she instantly knew. Each time, she took one look at me and knew I was no better.

I look at stacks of books I'd really wanted to read, and I feel nothing. I watch the seedlings in my indoor herb garden shrivel and die from neglect, and feel nothing. I am dragged, against my will, to places I used to love. I feel nothing. My husband is a wonderful man, and I love him so much it's disgusting. When I get sick, I look at him and feel nothing. People die, and I feel nothing. I was sick on September 11, 2001. All I could feel was rage that all those people-people who were truly alive-were murdered while I, a corpse that everyone perceived as alive, was still "living".

Doing my homework from therapy, I force myself to go places. Anything to get me out in the world and imitating a living person. I was raised to NEVER cry. In Office Depot, I cry in front of the staplers. In the grocery store, I stand in front of the green peppers and I cry. I can't even feel embarrassed. Strangers voice concern, I feel a gentle touch on my shoulder. "No, I'm fine, thank you." Why can't they see that I'm already dead?

I know the location of every gun shop in town, even though I've never touched a gun in my life. I want a gun, I need a gun. This will be no suicide attempt, I will complete the act. Suicide isn't always a cry for help. Sometimes it's a last desperate act to end the unbearable. I am in a persistent vegetative state. I am long gone, but this stupid body continues living. I need a gun to end the charade, but I can't inflict that pain on my husband.

I hate him for that.

My psychiatrist brings up shock treatment, and I resist, but not for the reason she thinks. Shock therapy fails for 20% of the people who experience it. Every damn drug they've given me has failed, so why would shock treatment work? Knowing that shock therapy is a possibility is my "out". It's an extreme option that might save me. If I try it and fail, I don't think anything will keep me from killing myself. So I have to keep it as my safety net. If suicide is imminent, then shock therapy will (likely not) save me.

During all of this, I am in graduate school, pursuing a degree in biological psychology. My academic adviser, who has a Ph.D. in psychology, makes constant remarks at me. "You should be able to get your emotional problems under control." "You should realize how lucky you are that you only have an emotional problem. What if you had a real physical problem!" "Why is it taking so long for you to recover?" (This depressive episode lasted from March, 2001 to May, 2002.) I go to another faculty member in the psychology department for help. Her area of expertise is clinical depression. I tell her I can't function. She tells me to try harder.

Summer, 2001, I take a leave of absence from graduate school because I cannot function. My adviser has never paid 1 cent of my stipend. I am just free labor for him. There are no students who have come in after me, so the lab is not pressed for space. In spite of this, he gives me an ultimatum in January 2002: either recover by June 1st and be prepared to come back and work 100 hours a week, or leave. He also gives me life advice: "Depressives aren't suited for research" and "You could never run a big research lab like I do. You couldn't handle it". The psychology department sends me a threatening letter: I'm not making satisfactory progress in my training. How can one make progress while on a leave of absence?

Finally, in May, I am prescribed lithium. Lithium is toxic, so I start on a baby dose.

Something is different.

The dose is increased, my blood levels are monitored, and suddenly, I am me again. I believe that I'm manic, because the difference between where I was and where I am are so extreme. "No" they tell me, with smiles beaming. "You've always been hyper. This is normal for you!" I leave graduate school with lasting bitterness and a compensatory master's degree.

Please think about this essay the next time you hear people make light of depression. It doesn't happen to everyone. You don't just pull yourself out of it. It is not a character flaw.


quakerdave said...

Thanks for your openess on this topic. My older siter has been dealing with depression since her teens. When people use the word "crazy" in most conversational contexts, it makes me... well, you know.

Adding you to my blogroll as we speak...

quakerdave said...

... that would be *siSter*. it's these darn braces...

spotted elephant said...

I hope your siSter :) is doing well. What really gets me is that once in a while, *I* slip and say "crazy". Oh!

Thanks for blogrolling me Quakerdave- right back at ya!

Justjuliefornow said...

Wow. I am so sorry your illness is that severe. I think I should say that I am sorry you suffer from any illness. I suffer from a lesser version of cyclical depression. I am in a cycle right now and having a lot of trouble communicating. I do not sleep but want to stay in bed. I am told, "go out in the sunshine, you'll feel better." I wish it was pouring down rain.

I think visiting here was a good thing as I do not want to read anything as I usually do, but I feel less alone at the moment (ummm, can't stop crying).

spotted elephant said...

Juliemora-I'm so sorry you're in such a bad place right now. You said you suffer from a less serious version of cyclical depression, but any diagnosable depression is serious. It's easy for everyone to say "just get over it" as if it was that easy. Are you getting help and support?


spotted elephant said...

Julie-feel free to email me if you'd like:

spotted elephant said...
This comment has been removed by a blog administrator.
manxome said...

SE, I could really identify with your experience. The inability to focus (as in reading), the sleeping, the apathy toward those you know only logically that you care deeply for, the thoughts about ending things but again, knowing somewhere logically that it would hurt others, hanging on to that, yet it adds to your despair because that leaves no escape. I know the feeling when a med makes you feel so good, so alive, and you somehow know deep inside that it's just the real you that's been gone so long, but it's envigorating.

I'm glad you finally founds something to bring you back. If only it didn't have to come after so much frustration that doesn't quite go away.

hexyhex said...

Wow. This sounds so familiar... both the experiences of the illness, and your experience of finding the right medication for you. I went through a very similar thing.

I may blog about it when I get home, although I don't think that will be within time for Blog against disablism day.

Thanks for writing this. Years further down the recovery path, it still somehow surprises me to be reminded that I'm not the only one.

Anonymous said...

Thank you for your honesty and bravery in telling your story publicly. I wish you the best and hope that you will find relief. I'm chronically depressed, experimented with various SSRIs in the 1990s, became hopeless and lost all motivation to learn how to control my life, and fell into a barely functioning state of going to work, enduring my kids, barely paying the bills, etc. I could not afford a therapist. Then I moved to the west coast and the change in weather and sunshine helped me ditch antidepressants for good. I have been on the east coast since last fall for graduate school and have fallen into a horrible, persistent depression, anxiety, insomnia, hopelessness, constant negative voices harping at me, and my self esteem is nonexistent. I have not found a therapist who will help me. I refuse more antidepressants. I don't know what to do anymore. I just want the pain to end. My daughter says I'm borderline.

spotted elephant said...

Anon-I don't want to push pills, as they're not always the answer.

But I can't help but wonder, with your persistent depression, and lack of response to antidepressants, have you ever considered mood stabilizers (not necessarily lithium)? Your response to sunshine is telling-light therapy could be good for you. Some research is now supporting the idea that bipolar (not sure about unipolar) depression is at least partially, a metabolic disorder. I'm just throwing out ideas-I'm NOT a clinical psychologist. Please hang in there. Grad school is really stressful, which adds to your burden. As I said to Julie (above) feel free to email me if you need someone to vent to.

Book Girl said...

That whole `physical problems are worse than emotional problems' BS just infuriates me. I was born with cerebral palsy - and it's the first thing people notice about me, but I've also suffered from severe chronic depression since about the age of 7 (I was officially diagnosed at 19, but I can track it back to at least that age). For me, the depression is much, much, much, much worse than the CP - I can live around the physical difficulties, there is equipment and assistive devices to make up for the physical limitations. But the depression... oh god... it is positively unbearable. Your description of it fits my experiences so well. You will note that I used the word `suffer' when referring to my depression, but I never use it in reference to my CP.

People can be so arrogant, sanctemonious and ignorant about mental illness.

Laurelin said...

So much of what you have written sounds familiar to me, Spotted Elephant. I'm sorry that you have to go through that, Depression is fucking horrible and the way it is treated is despicable.

I had problems with my degrees because of Depression/ OCD/ GAD- it seemed like Uni people just wanted me quiet and not rocking the boat (or even showing anyone that there was a boat), and didn't give a shit about what was going on. It makes me so angry.

Kim said...

That was amazing to read, SE. When I was pregant, I became frighteningly depressed, could't "snap out of it," robot-funtioned. I've been hit with depression when my anxiety kicks in (after big changes in my life, historically) and have had difficulty reading. It's horrible.

Still, my experiences pale in compared to yours. I'm so sorry you thave to go thru that. (((Hugs))

Kim said...

I think that was the messiest, flawed Comment I've yet left anywhere. Sorry about all those typos.

Jonathan K. Cohen said...

I had to leave graduate school with a terminal master's degree because of my bipolar disorder.

Lithium turned me into an overweight retard -- stable, but completely useless.

But at least I don't want to die. I'm completely dependent on my wife and parents, but am willing to accept being alive and doing the minor things that count for achievements now.

I hope you can get to where I am. It's a compromised life, but it is, at least, life.

Montag said...

Gutwrenching post, SE.

My Grandfather was bipolar when it was still called manic-depression. He had shock treatment, but after that, settled on lithium.

I've had bouts with depression and used to worry that I'd inherited my Grandfather's illness, but some visits to a psychologist told me that was not the case. From your description, my experience isn't even close.

I can commiserate somewhat regarding other peoples reaction. When I was feeling worst, before seeing the psychologist, people close to me would tell me things like, 'you just have to snap out of it,' which I found aggravatingly unhelpful.

Thanks for telling your story. I am glad you are doing better.

la somnambule said...

I feel really privileged having read that. Thank you for sharing it.

lost clown said...

Thank you for openly and honestly sharing your story. You are amazing.

And to the person who said that per's* daughter thinks that person is borderline: that is one very hard diagnosis and should only be made by someone who *actually* knows how to deal with borderlines. That being said DBT (dialectical behaviour therapy) has worked wonders for borderlines and non-borderlines alike. I'm starting it this summer (my post for BADD was about BPD). I've heard rave reviews. Another non-drug treatment you can try.

*trying to move all my pronouns to gender neutral territory.

spotted elephant said...

Thanks to everyone for sharing your thoughts.

Book girl-wow. I can't think of anything adequate to say. Just wow.

Laurelin, I have GAD in addition to the bipolar, and am teetering on the brink of OCD. Maybe we were separated at birth?

Kaka-I hope you're not still going through that. And, the depression kicks in when my anxiety gets out of control too-if the anxiety goes on long enough. I wonder if that' a common occurrence.

Jonathan-I'm so sorry to hear you've been through that. The side effects of lithium are intense-I'm "foggy" but I don't think I have it as bad as you do in terms of side effects. I hope things get better for you.

Montag-Saying "Snap out of it" should cause instant, explosive diarrhea in front of everyone. Sure, some of the people mean well, but they do real damage by saying that.

Madame D said...

I can relate to this, so much.
Every few months, I have those periods, the sleep all the time, lay in bed all day, don't turn the tv on because I don't even care about having something playing in the background.
I'm amazed you have been able to go that far in school. I can't even handle a semester before something goes wrong.

I don't know what keeps me here any longer. I really don't.
It's not my son. It's not the man I love. It's not the threat of "I'll hate you forever". I'm not sure what it is any longer. Maybe me trying to not let it win.
Nothing's enough, though.

Laurelin said...

Wow, Spotted E, I think you're right! My moods are rather unstable, and I've recently rediscovered how much worse things are when I forget to take my meds. I feel like a frickin' yoyo most of the time! I've been given various diagnoses at various times...

In case I haven't mentioned it lately, I love ya, SE. And I think this post will have helped many people. xxx

Sally's Life said...

Dear 'S.E.'
Thanks for your blog of BADD. I have physical disabilities, use a wheelchair.
My life is much easier than life for people with mental disorders, because I am in charge of my brain most of the time. I can use that to deal with a dis-abling society.
My father had/was bipolar and my childhood (not disabled then) and my mental health was disrupted by his severe mania/depression. He didn't disrupt, he loved me, but the effects of his condition, and society's response, did; we had to move after every event. Something to do with family pride and blaming me the first born for his illness. That is me off-loading my stuff, what I really came here to say is .... I agree with your opening statement; the brain is physical, and it is easier for me in my physical disabilities now, than when I only had 'hidden disabilities.' So, my heart felt thanks for your honest open description of how your condition, and society's attitudes, affects your life.
I hope it is ok that I have put a link to your blog on my page, to spread your message.

Justjuliefornow said...

Thank you for being so supportive. I am feeling a bit better now. Still blah, but coming back.

You're terrific.

spotted elephant said...

Madame-I hope you can get things worked out soon-depression is cyclical, so at some point it *has* to ease up. The right meds can push things, please keep trying.

Laurelin-Yo yo is right.

And I love you too!

Sally-I'm honored that you linked to me.

I wasn't trying to say that "mental" disorders were more difficult than physical disabilities. That is a contest no one deserves to win. I was just trying to address (as you did) that mental disorders get dismissed, and would people please stop doing that.

I really love your empowering statement about using your brain to deal with a dis-abling society. Beautiful.

Juliemora-I can't think of any way to say this without sounding bossy, so please accept this in the spirit it's intended-depression is so awful because it can sneak up on you and wipe out your energy before you've realized it. Please try to stay aware of how you're doing day-to-day, and don't hesitate to seek help. (cringe-I'm trying to help, not trying to tell you how to live)

kimd said...

SE, as the mom of an 11 yo with pediatric bipolar disorder, I too face daily, and sometimes rage against, the dichotomy between physical and mental disabilities. My son looks normal. Thanks to an appropriate diagnosis 15 months ago and wonderful psychiatric care and doc and finding the right combo of meds (at least the right ones at this moment), 98% of the time he behaves normally. But at the same time, since he looks and acts "normal" most of the time, the expectation that he is "normal" from most people, even those who know of his disability, causes problems in those instances that he is lost in his behavioral seizures. That creates its own heartache, but it could be much worse. (I say that a lot and there are days when I am heartily sick of making lemons into lemonaide.) I want to scream when I see celebraties pushing a fund raising cause, not because the cause they are pushing isn't worthy-it is. I want to scream about the causes that aren't pushed for, such as research and treatment facilities for pbpd. St. Jude's hospital for children is a wonderful cause and they do great work, but where's the nice children's psychiatric ward with cheerful colors and experts in my son's illness. Or at least the movie star requesting support to be sent to cabf for further research. Sometimes I think that the "hidden" disabilities carry their own special "extra" baggage - there's no wheelchair or brace to announce to the world that there is something different, and that is both a blessing and a curse.

Justjuliefornow said...

Not sounding bossy at all. I have been on meds and through therapy when necessary - several intervals, some more helpful than others. I have developed some coping methods (they seem to work for me). Sometimes it can take a little longer. Although I have a great support system, sometimes (as you know) that can feel like more of a burden than a help. You know, the feeling of how can I lay this on those that love me and all the other guilt associated with depression.

Reading your post and communicating with you has been a big help. Your description of what you go through was chilling and I am awed by the fact that you are able to describe is so clearly. I do not make light of any depression, but I do believe that some are more serious than others. When it is bad I know mine is serious, I think by lesser I meant that I am (usually) able to pull out of it relatively quickly using some of the things I have learned since my original diagnosis back in 1990.

I am feeling better, some of my triggers are external and I am dealing with them so that makes a difference. I am a talker so being this chatty is a sure sign I am feeling better. When I reached out to you I was barely able to type that first comment. See how the volume has increased?

spotted elephant said...

Kimd-I can't imagine dealing with this in a child. The frustration factor must go way up. And I hear you about appearance-if you look "normal" then everything is peachy. So far from reality.

Juliemora-So glad to see the change in volume! I'm glad you're feeling better, and that you've found some triggers. That can be surprisingly hard to do.

Mr.E said...

Spotted elephant,


You might not have openly said this, but would you agree that the mythology of normalcy ends up worsening depression and hurting people?

I was inspired by that message.

In fact, I put that message in a short children's story that could help inoculate kids against the hurtful message(s) of some advertisers.

I'll put it here to see if someone with experience in this area would like to take it as his or her own, or change it (please delete it, if you think it's off topic, also, you are free to ‘lift’ the story.)

Here: The Panda, the Fox and the leopard’s skin:

A young panda skipped up to a fox feeling perfectly happy and said Fox! Isn’t my coat soft and shimmering, perfect in every way!

The fox said, oh, yes my dear, your coat is soft and shimmering, but clearly you have not seen the coat of the leopard.

The panda said: I have never seen such a coat, but I know mine is the softest and most shimmering, It is mine and I love it.

The fox said: aha, your coat is nice, but everyone who is anyone has the beautiful leopard’s coat.

The fox pulled a leopard’s shiny and spotted coat out of his chest and said; this coat is much more beautiful than yours and can be had for a small prize.

Then, The wide-eyed panda went off to search for a prize to give the fox.

She looked and looked, but could not find a worthy prize.

Then, her panda friends came and said: come play in the bamboo with us!

Instead of playing, our panda scurried away to the bushes to hide alone.

She was embarrassed to be seen wearing such an ugly coat.

spotted elephant said...

Mr. E-That's a wonderful story! :)

I hesitate to discuss "normalcy" with depression because it seems like people take one of 2 extreme views:

1) People with mental illnesses are marginalized as freaks and shunned. In this case, your point would be invaluable.

2) People minimize the impact of mental illness (the "Well, everybody's been depressed" mentality), which does so much damage. If everyone gets depressed (down in the dumps, feeling blue), then *everyone* should be able to pull themselves out of it.

So yes, I agree that the concept of normalcy is a huge problem. Set a narrow standard for what's acceptable and the majority of people will suffer because of that standard. The problem is respecting variation while still being able to detect and help people who are suffering.

I love that story!