I Am More Than My Disability?

Today, a friend reminded me that I am more than my disability.

And I think that’s a big part of why I have been so depressed recently: I have all but forgotten that fact.

I have been so mired in dwelling upon what I can’t do that I’ve forgotten to focus on what I can do… and when you get caught up in that sort of murky, muddy, muddled thinking, the world itself is like quicksand all around you. It’s hard to breathe. It’s hard to think. It’s hard to move. It’s hard to do anything.

I had forgotten that just by being being me, and by being around, I make a positive difference in the world.

I don’t know why I make “making a positive difference in the world” a harder thing than it needs to be.  Just being alive and being kind and loving are things that come naturally.

Learning When To Not Listen To Myself

Today, I was invited to a networking dinner for music and theater professionals, and my first instinct was to say, “No,” because I didn’t think I had anything to offer anyone at the dinner… but rather than go with my instincts, I asked my friends on Facebook what they thought.

Across the board, the answer was an emphatic: “GO!!!!

I knew that it was important to get the opinion of others because I can tell that I am holding myself back, based entirely on my opinion of myself because of my disability — and that is also part of my depression.

So, I responded to the invitation and said that I would attend…but not before I probably shot myself in the foot by answering his questions about my career goals by starting with, “I currently do not have employment, as I have been disabled with multiple sclerosis and a seizure disorder for the past 5 years. Recently, however, we’ve gotten my seizures under control, and I’m *very* keen on getting back into working in the music industry. It’s been my lifelong passion, as I’m sure you can tell from my resume.”

I wish I could take that email back and just say that my career goal is to get a job in the music industry.  But that opportunity has come and gone.

Who Am I Without MS, Seizure Disorder, Hypertension, & Depression?

Is there even a person under there?  I mean, I’m sure there is. I just have spent so much time concentrating on my life with these conditions that I’ve forgotten about my personality. I’ve forgotten about me.  It’s easy to understand why I have been suicidal if all I do all day long is be alone and think about how bad I feel and focus on being at the effect of all of these medical conditions.

So I have a new mission: finding Rachael again… because she’s lost.

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Reasons To Be Hopeful

If there’s one thing I can say about myself, it’s that looking back on my past, I have done some pretty cool things.

Not everybody does the hard work to get in to Berklee College of Music on scholarship, and fewer people start Greek Life at the college while they’re there.

Most folks don’t also spend time doing an internship at a web-based radio station at the same time and also write up and shop a $5 million business plan that they think will revolutionize the music industry only to see their hopes dashed in the wake of 9/11… But still pick up the pieces and talk with folks like CD Baby about how to get independent artists more exposure even when it won’t benefit them financially.

Not everybody rebounds from a divorce by packing up all their worldly belongings and setting out to Los Angeles to go to law school at Southwestern Law School or can finish law school even after they’ve been diagnosed with multiple sclerosis either.  But I did that too.

And I know for a fact that most people don’t try taking the bar exam with seizures. But I did that. Twice. Because I’m tough as nails, and I don’t quit unless I know I’m licked.

That’s why I know, I will kick this depression and anxiety in the ass and somehow emerge a better person than I used to be.

I’ve been rapidly losing friends on Facebook that I used to know in high school, and truth be told they were never close friends to begin with. To them, I say “So long, and thanks for the lack of support.”

You can’t grow without pain.  You can’t change without being uncomfortable, and damn it all if I’m not uncomfortable right now.

I really wonder who I’m going to be… but I know, because I’m putting constant effort in (like going to the gym at least every other day, going to the doctors that I need to see, setting miniature goals and keeping up with my progress), that I’m going to make it past this struggle.

So when I had a seizure at the gym tonight, and Adam suggested that I immediately stop taking the Abilify that I just started again, I didn’t feel like that was a setback. I felt like that was a statement of strength where we both knew I wasn’t going to take a step backwards into “seizure disorder world” and instead, we’re powerfully pushing forward into wellness.

Things are going to get better.  It’s the only way I’m willing to go.

Still Here = Winning

I have to keep reminding myself that the goal, every day, right now, is to just make it through the day.

I keep getting distracted by questions like, “Why am I here?” and “What am I any good for?” or “What is my purpose?” — questions that serve no purpose other than to leave a wide opening for Automatic Negative Thoughts.

Yesterday’s “Fun”fest

Yesterday, I saw my psychiatrist. He was not pleased that I am doing so unwell that I’ve stopped wanting to have a child, but neither am I! He put me back on 5 mg of Abilify and put me up to 50 mg of Nortriptyline. I have to see him again in 3 weeks.

In other news, I found out yesterday that I can no longer see my new therapist because she is not Medicare qualified. That blows. So, I am going to go see the therapist at my psychiatrist’s office who I saw about a year ago, so that I don’t have to go through my entire psychological profile for a third time.  I really don’t like that therapist much, but I know she works with my insurance, so I’m biting the bullet and am acting like an adult to get the care that I need so that I can move forward with my life.

I also saw my epileptologist yesterday, and we’re still working on weening me off of Topamax, as though the baby plan were still in motion. Right now, we’re dropping me by 50 mg increments every 2 weeks to see how low we can get without seizure activity starting up again. I see her again at the end of May.

So where does that leave me?

I still am home, alone, depressed as all hell, charged with the responsibility of keeping busy to keep suicidal thoughts at bay for 6-8 hours a day.

Why am I suicidal?  Because I am painfully lonely, trapped in the apartment because I cannot even get on public transportation alone because of anxiety after years of seizures, and I have no idea who I am anymore or why I should keep living aside from the fact that I don’t want to hurt the people I care about and who care about me.  I am often paralyzed to do even simple things, and I deeply loathe myself for it. I spend an inordinate amount of time trying to convince myself I’m really not as terrible as I think I am, and that my life is really worth continuing to work so hard to save.

I hate myself for being a drain on my family and on society, and I feel like I give almost nothing back.  This blog is something, but it’s not much. Doing dishes and laundry is just part of the human condition, so it doesn’t count. I spend a lot of time on Facebook being a supportive friend because it’s the only outlet that I have that allows me to be kind to others and to foster any kind of loving environment. I was told from an early age that I was special and that I was meant to do great things… but I don’t see anything great about me. I want to make a positive difference in the lives of others. I just don’t know how I can.

Why don’t I just get a job?  I would love to, assuming there’s work available that I could do, and someone would want me as an employee.  But if I get a job, it’s got to be through the Ticket to Work program, or I’ll lose my Medicare insurance, which means I’ve got to find a way to get to the Department of Human Services and talk to a vocational counselor who would help place me somewhere.  And in order to get to DHS, I’ve either got to be driven there or get on a series of buses. And I can’t get on a bus yet. So I’m sort of trapped for the moment.

I suppose I could take a taxi, but I don’t know what I ought to wear when I go, and to be honest, I’m really frightened of the whole thing.  Even if I went, and even if they could get me a job straight away, I don’t know how I would get to that job.

So I’m really trapped by anxiety.

And that’s why I’m taking medicine and am seeing a therapist.  I just have to keep going.

Patience has never been my strong suit.

 

Keeping Busy

It’s 11:45, and I have 5 hours until Adam comes home, and we go to the gym.

I know that it is my responsibility to fill that time with things to do so that the ANTs (automatic negative thoughts) don’t get the chance to drag me down. The only problem is the ridiculous anxiety I feel all over, as I try to convince myself there are things to do.  I haven’t even eaten breakfast yet today.  It’s so silly that I’m actually afraid of being alone with my thoughts. I mean, what’s the worst that could happen? I feel bad. I cry. Not like I haven’t been living through that scenario consistently for several weeks now.

I think it would be easier for me to give myself tasks to do if I had any goals at all, aside from staying alive and not harming myself – though, to be fair, those are important goals that require vigilance and real work on my part right now.

Detaching from the Sofa (and the Computer)

For the last 5 years of my life, or so, I’ve been basically chained to the couch or the bed because I had so many seizures throughout the day that leaving them seemed like an unsafe idea.  That has meant that I’ve spent the majority of my time surfing the web, being on Facebook, blogging, meditating, and listening to music.

Prior to those 5 years, I was in law school for 3 years, which meant sitting on the couch studying… and prior to that I was a web designer who sat at a desk, working on a computer.  Sitting on the couch, working on my computer honestly feels like the only thing I can do.

The hardest (and probably most important) thing for me right now is learning to just get off the couch and to recognize other activities as valid uses of my time.  I know that right now, just sitting here creating this blog entry is the opposite of that… but at this very moment, I’m more concerned with eating away at that 5 hour chunk of time before the gym than I am at immediately breaking habits that have taken my entire life to create. (Let’s be fair – before I was a web designer, I was a child who chatted on BBSes for endless hours while her parents were at work. I have always used sitting at the computer as a way to make time pass less painfully.)

So what can I do?

That’s where I’m stuck today, and to be really honest with you, I’m having to seriously brainstorm as I’m writing.

The only things that I can think of to do are as follows:

  • Make the bed
  • Fold the clothes
  • Do the laundry in the bathroom
  • Vacuum
  • Take the dog for a walk
  • Dust
  • Mop the kitchen and bathroom floors
  • Practice guitar and piano
  • Create some Spotify playlists (which puts me back on the couch and on the computer)
  • Create business cards for Mom (which puts me back on the couch and  on the computer)
  • I should probably eat sometime today too.

I wish I understood why these tasks feel punitive… as though my inner-Mom voice is ferociously yelling at me to do them, as though I’ll be in serious trouble if I don’t.  There’s some kind of childlike, rebellious, whiny, “I don’t wanna” thing going on inside of me.  Keeping busy is how to escape the terrible pain of wanting to kill myself… so how is that a punishment?  I feel genuine, earned pride when I see what I’ve accomplished… and that’s good for my self-esteem, so clearly doing these things is good for me, and on an adult, mature level, I know that.

I think the hardest part of making myself do these activities is that my brain is repeatedly telling me to just go back to sleep, as opposed to doing anything at all — and really, what that means is “lay in bed and let the ANTs attack you.”  And I know that’s the worst thing I could do.

Something’s seriously wonky with my attitude if I can’t get myself to buck up and do at least some of these chores.  Then again, it’s now 1:00 p.m., I still am in pajamas, haven’t eaten breakfast, and am sharing my struggles with depression, MS, and seizures with the universe-at-large.  There’s a cogent argument that my attitude is wonky as it is.

At least, I’m trying.  I got out of bed this morning.  That was difficult, but I did it.  If I could do that, I can make myself some cereal, and take my morning medicine, albeit several hours late.  And if I can do that, I can make the bed. And if I can make the bed, I can fold some fucking clothes. I just have to take the steps.

Less thinking, more doing.

Starting now.

Saving My Own Life (And Maybe Yours?)

First and foremost, I have to say that I love my new therapist. Last night, she put it to me that when I called her initially, I left a message that essentially sounded like this: “Hi! My name is Rachael. I’m a very happy person who is chronically suicidal. Please help me to not kill myself. Have a great day!”

If that didn’t ring with truth, I don’t know what does.

We’re only on our second session, and we’re already getting down to the nitty gritty of what’s got me in an existential choke-hold.  I figured, I can’t be the only person in the world who is dealing with this kind of stuff (in fact, I’m sure of it), and I wanted to share what I’m learning with the rest of the world for a few reasons: (1) typing all this stuff out helps me reinforce my learning (2) typing it out keeps my mind active and off of my automatic negative thoughts about myself and (3) I genuinely want to help other people who are suffering too.

Automatic Negative Thoughts (or ANTs)

There are thoughts that occur as a reflex in your brain when you’re not doing anything. They happen all on their own. You don’t want them to happen, but they happen anyway. They’re automatic! And they’re negative.  And they happen to everyone.  It’s natural. We’ve got to fight them in order to be healthy and okay.  Your ability to fight them determines your level of okay-ness.

What’s happening with me, with my suicidal thoughts, is that I’ve not been fighting my ANTs, and they’ve been taking control. Fortunately, a person is always in control of his or her behavior, and because of that, I have been able to control my behavior and make the choice not to harm myself! And that is a good thing! Something to be celebrated! 🙂

Here the ANTs come marching…

  • All or Nothing Thinking – Sometimes called “black and white thinking” If it’s not perfect, I am a failure
  • Over-generalizing – Seeing a pattern based on a single event or being overly broad in the conclusions we draw. Nothing good ever happens
  • Mental Filter – Only paying attention to certain types of evidence: blocking out the good and noticing failures but not seeing your own successes
  • Disqualifying the Positive -Discounting the good things that have happened or that you have done for whatever reason
  • Jumping to Conclusions – Mind-reading (imagining we know what others are thinking) or Fortune Telling (predicting the future)
  • Magnification (catastrophising) & Minimisation – Blowing things out of proportion or inappropriately shrinking something to make it seem less important
  • Emotional Reasoning – Assuming that because we feel a certain way, what we think must be true. I feel embarrassed so I must be an idiot.
  • Using “Should” and “Must” statements – Critical words like “should”, “must”, or “ought” can make us feel guilty or like we have already failed.  If we apply them to others, the result is often frustration.
  • Labeling (or name-calling) – Assigning labels to ourselves or others.  I’m a loser; I’m useless, etc.
  • Personalization – Blaming yourself for things that are outside of your control. Taking responsibility for thinks that aren’t completely your fault, or conversely blaming others for something that is your fault.

Ways to challenge Automatic Negative Thoughts (ANTs)

Below is a list of questions that can help you to challenge the negative thoughts:

  1. What evidence do I have for and against this thought?
  2. If a friend was in a similar situation and asked me for advice, what advice would they receive from me?
  3. What’s the worst that could happen? How terrible would that be?
  4. Is it true that I really “should?”
  5. Am I overgeneralizing or explaining my thinking with experiences from my past?
  6. Other than blaming myself, is there another explanation for this thought or situation? Am I really the one to blame?
  7. Can I find another, more positive way to look at this situation?
  8. Does thinking this way help my situation or does it make it more difficult?
  9. Do I really have control of this situation? Am I really in control?
  10. What meaning will this situation have tomorrow, next week, next month or next year?
  11. I’ve been in a similar situation before. How did I handle it then?

An Idle Mind Is the Devil’s Playground

This is where my work gets hard.

I have a lot of “free” time. When you are idle, that’s when ANTs creep up on you. So it’s my responsibility now to not sit around and let myself think too much.  It means that I’m going to have to challenge my desire to sit on the couch. It means that I’m going to have to make myself do things, regardless of how sad I’m feeling and consistently remind myself that I am in control of my behavior.

It means no more 3 hour naps, trying to while away the hours until Adam gets home. It means cleaning when I don’t feel like it, and practicing guitar and piano, no matter how awful I sound on either of those instruments. It means opening the blinds even though it is grey and cloudy outside, taking Brisco for walks around the block even though it’s colder than a witch’s titty in a brass bra.  It means forcing myself to be busy.  Because busy doesn’t let the bad thoughts creep in.

Life is Hard

I saw a video today by a motivational speaker that was addressing a high school after one of their students had committed suicide, and it had a very important message for everyone in it – something that I had forgotten after all the years of just trying to cope with seizures and being happy that I had gotten to the point that I was able to just be okay with them… and that is that life is hard. It’s supposed to be.

So, I’m okay with the fact that it is going to be challenging to keep myself busy and mentally engaged, when the easy way out is to let myself sit and ruminate with negative thoughts.  Am I looking forward to doing the dishes, making the bed, doing the laundry, vacuuming, or practicing my instruments?  Not particularly. But I’d rather not break down crying again and think about ending my life either.  It’s a give and take.  I can tell you this much.  I’m going to try my best.  That’s all I can do.

I Don’t Have An Option

When nearly every moment of every day is a fight not to kill yourself, you don’t have the option of whether or not to be on an antidepressant. You need to be on one.

Whether or not it causes me to have seizures becomes irrelevant. The question is, “Do you want to die?” and the answer is “No.” So I need to get back on something that is going to help me stop constantly thinking that I need to end my life.

Do I want to have a child?  Sure.  But that doesn’t matter.  What does matter is making the thought “I NEED TO DIE RIGHT NOW”  go away — and talk therapy isn’t gonna do that in a few days.

Does that thought have any solid, rational reasoning behind it?  Absolutely not. That’s what makes it scary and wrong.  I know — know — that the thought is pervasive and incoherent and trying to take over for its own sake. I know that Suicide is a delusional liar.

I know, when I’m giving myself reasons not to kill myself like, “Think about how much money the funeral would cost your husband,” and “Imagine how much pain it would put your family and friends through,” and “Your funeral would totally suck because even your best friend has told you that she wouldn’t attend if you killed yourself!” that I am way, way, way beyond the point of needing basic non-medicinal help.

I know, when I notice myself trying to convince myself that Adam could ever love again and eventually have a family of his own with some other woman, when I know that he’s the one who would find my lifeless body, that I’m fighting for the wrong team.

So, I’m going back on meds, even if it means that I start having seizures again.

I simply cannot cope.

No Idea What To Do

What do you do when you find out that every wish on every birthday candle, every wishbone, every shooting star that your husband has had for the last 5 years has been for you to stop having seizures, and that’s what’s finally happened… but you don’t think you can keep going on without antidepressants, which are what were bringing down your seizure threshold and causing them to happen more frequently?

It’s only 10:20 a.m. – I have only been awake for an hour and a half – and I’m already feeling deeply morose and panic-stricken because all that I have left to do today are dishes and laundry, which won’t even take me an hour.  I am already freaking out about how every weekday is exactly the same in its loneliness, emptiness, and ultimate lack of purpose. My level of distress is intolerable and physically icky.

All that I want is to feel like I am not a waste of space and resources. I want to have activities to do. I want to feel like I make a positive difference in the world.

I know that I matter to Adam. I know that I matter to my family.  I know that I matter to my friends.

I know that being depressed like this doesn’t help anyone.  I feel like I’m fumbling around in the darkness trying to find my way out and am constantly knocking into walls.

I wish, more than anything, that I could stop panicking about it all.  The sense of urgency to end the anxiety over the whole situation, I think is what drives the suicidal thoughts.

It’s like “AAHHH! OMG! THERE’S NOTHING GOING ON!!! THAT’S NOT OKAY!!!”

It makes me sick at my stomach. It makes me want to hide.  It makes me wish I could sleep all day.  It’s embarrassing, not to know what to do with yourself, and to realize that you’ve gone for so many years having constant seizures that you didn’t notice you weren’t doing anything and were okay with it.

I’m ashamed to say that part of me wants the antidepressants back because I had accepted the seizures as my lot in life and had become accustomed to living that way.  It’s a lot harder trying to fill your day with activity and purpose when you had convinced yourself that you couldn’t do things.

Last night, Adam had me cook him an egg.  That was something I hadn’t done in years.  And I know that if I can cook an egg, there are probably a lot of other things that I can do too.  I’m just scared.  So I’m paralyzed by my mind, and that’s… well, terrifying in and of itself.

I’ve got therapy tonight, and I’m glad for that.  I feel fundamentally broken and completely lame. Maybe the doc can help me put myself back together. Right now, I can’t even get on a bus to go to the gym by myself.

There are some things that I’m trying to do at least. I’m warming up vocally again, even if I don’t have a band to sing with or a chorus or anything.  I’m dancing to music when no one’s around rather than just sitting around, to try to shake off the blues… I’m really trying to not be sad.

Maybe if I try long enough, it’ll start to work…