What took you so long?

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There’s a great scene in one of my favorite movies that’s been playing in my head.

The movie is Singles and it’s the part of the movie where Campbell Scott‘s character has been holed up in his bachelor apartment due to a broken heart (and some rejection of his big project at work).

Campbell Scott plays a traffic and transportation expert.  Kyra Sedgwick plays his love interest, an environmental something or other – maybe a marine biologist?

When Kyra Sedgwick knocks at his door,  Campbell Scott opens the door and, in an unshaven, exhausted, ‘losing it’ kind of haze, pleads ‘what took you so long?’

Kyra Sedgwick responds ‘I was stuck in traffic.’

It’s a great dialogue.

It’s pretty basic movie irony. He’s a traffic expert; she was stuck in traffic. Blah blah blah.

The scene also harkens back to the beginning of their relationship when he was chasing after her and they acted out the same dialogue with roles reversed.

Here’s the scene if you want to watch: click here for scene

I’ve seen that scene countless times. It’s a movie I’ve watched over and over. It’s one of my ‘helper’ movies – it helps my mood, so it’s good movie choice.

But it’s not just a safe, helper movie. It’s also a really great movie. Not Chariots of Fire great, but Big Chill great. If you haven’t seen the movie, I highly recommend it. The backdrop is Seattle coffee shop and grunge.

“What took you so long?”

What took you so long?

The fact of the matter is that things take time. And often, they really seriously take even more time that you would have thought.

And sometimes, they take so much )(*&^% time that it’s a total *&^%$# annoyance.

Sorry for all the (*&^%$-ing.

Yesterday I saw my brother-in-law.

Oops….shifted the focus just there. Sorry if I lost you.

Anyway, I saw my brother-in-law who isn’t really my brother-in-law.  But I have no other good title for him.

He’s the brother of my sister-in-law, the gal who married my brother.

What does that make him?

If you happen to know what I should call him, let me know. Right now the explanation of our connection takes too long to say.

So anyway, I saw him yesterday.

Let’s call him Chris… since that’s actually his name.

I see Chris a few times a year when he visits DC from the far off and exotic places where he lives, works and visits.

It drives me crazy that Chris, in recent years, has had the unfortunate timing of seeing me when I was really just ugh (i.e., really getting the run around from my life partner, depression).

I really don’t like for people to see me when I’m not feeling like myself.  It’s embarrassing to me and makes me feel worse. At those times, I feel like my being down detracts from all of the times I was fabulous.  Even worse, I worry that my being down distracts from everything else that might be going on around me.

Luckily, Chris is just like family to me. He loves me and he likes me no matter what my mental temperature is on any particular day.

So yesterday, after one meaningful hug and a few brother-sister type teases, I was able to tell Chris that I was having a positive experience with a particularly important drug I have more recently tried. I was also able to share that general conditions were contributing to a ‘positive depression management experience.’

Of course I was also able to report on yet another drug that I will never ever ever get close to again. Yet one more drug that I tried only to find that it seriously spoiled a few (i.e., five) weeks of my life.

Chris was happy for me, obviously. News that depression is being managed effectively is always good news.

But he was also upset.

He didn’t understand why it had taken so long to get to a good place. He might have been mad at the depression for taking so long to cooperate.  He might have been mad at the Gods for making me work so hard just to feel normal. I’m not sure what his anger was aimed at, but he was clearly frustrated on my behalf (thanks, Chris!) and he was a bit indignant.

He was bold enough to ask ‘why does it take so long?’

So, you know, there are many questions I really hate in this world.

But this particular question is one of my favorites.

It’s one of my favorites because I really want people to care about this question. I want people to understand the importance of this question. And I want health care providers, scientists, researchers and policy makers to get me better answers than I’ve been given most of my life.

Why does it take so long to recover from a period of depression?

Well, let me explain what I know from my experience and from the experiences of some others I know.

When things go south in depression and life becomes a crisis, all of the focus, energy and resources must initially be directed at relieving the immediate pain and/or stopping the immediate threat to safety or health. In some cases, the focus must be on avoiding harm to self or others.

And it’s hard to get out of a crisis state.

It takes a lot of energy at the exact same time as the person in crisis has the least amount of energy.  It’s the worst timing ever.

It’s difficult, in the depths of a crisis, to keep going to work, managing a household, and maintaining a normal, functioning life. But all energy and resources must go to precisely that.

It may be a relatively short time of a few days or weeks to get out of crisis.  Or it may take closer to months or years to get out of crisis.

The recent flooding in the southeast provides a good range of crises for comparison.  Some individuals who have lost everything will have the benefit of a strong constitution, a variety of tools for managing stress, and quick access to excellent resources. If you think about it, you probably know people who can be described that way.

Then there are people who do not have a strong ability to handle stress. They may have excellent resources for getting out of a fire or flood, but they may not be able to make the most of those resources because of their own weakened state.

Of course there are folks who have little access to resources.  For them, the greater their ability to manage stress, the better the odds of gaining access to limited resources.

The bottom line is that getting out of a crisis is hard for anyone by definition. Crisis is difficult by definition.  Add to that extra stressors such as lack of resources, lack of support, lack of assistance, or a myriad of other factors, and getting out of crisis can get really tricky and take a long time.

After the crisis, there is usually a bit of space to breathe a sigh of relief as the pressure begins to subside.  In the case of depression, efforts to feel better may be starting to take effect as the pain of crisis is decreasing.  Medications may be starting to work, changes in diet, sleep, exercise or routine may be helping. Changes in treatment may be helping.

The recovery experience for most people is not a straight line but a jagged or winding path, filled with constant steps backwards.  It’s the typical one step forward, two steps back.

It is especially this way for anyone being treated with medication. Any change in medication, no matter how slight, may result in an array of effects, most of which cannot be adequately prepared for.

I should note that not everybody uses medication.

And I get that.

But some of us have experienced enough and tried enough to know that we actually need medication.  I am one of those people who cannot live safely without certain medications. No amount of supplements, exercise, being outdoors, meditating or yoga will do for my brain what certain medications do.

Now, I should say that it’s possible a vastly different lifestyle could take the place of medications for me, but the fact is that I’m living my life and I can’t easily change the life I’m living.

I work full time and prefer working to being on disability.

I also live in a very expensive area of the country (Washington, DC).  I could move to a less expensive area, but that would mean losing my primary support system, which would be a really bad decision in terms of health management.

So it’s not an easy formula. Every decision requires analysis.  And analysis is especially difficult during crisis or recovery, when the focus is on getting better, not prevention.

“What took you so long?”

What took you so long?

For me, the average time it takes to tell a medication is NO GOOD is at least a month.

With any new drug, I begin with a very low dose to avoid triggering a worse episode of depression or a new crisis. I stay on a low dose for days or weeks or longer to acclimate. The period has to be long enough to isolate that drug as the cause of any changes.

As the dose goes up, so does my body’s response. And as my body responds, the analysis of benefits versus side effects begins.

Do the benefits outweigh the side effects?

It sounds simple.

It’s not.

The thing is, you want the drug to work. You REALLY want the drug to work.

Every new drug you try is a new possibility that you’ll be feeling better soon and that life will be better.

But the side effects can be awful and can be debilitating.

Some side effects make even basic functioning impossible. Some side effects make going out in public embarrassing.  Some side effects feel worse than the condition that requires them.

One promising drug was amazing for me until the fourth month when I had a dangerous reaction. I had to stop the drug immediately, get treatment for the reaction, and clear the drug from my system. I can never again take that drug, knowing I have a reaction.

I remember being so upset afterwards because the medication had been working so well otherwise.  And a medication that works so well for your unique chemistry is just so hard to find.

But a bad reaction is a bad reaction.

Bye bye drug. Bye bye four months of my life.

The most recent horrible (for me) drug only ruined five weeks of my life.

But it was a really awful five weeks.

So, you might ask, why would you try to change drugs that work? Why not just maintain drugs that work and not rock the boat by making changes?

IKR?

Personally, I would be overjoyed if I found a cocktail that worked and that I could always be on.

But it doesn’t work that way. 😦

Drugs stop working over time for many people. Or new episodes of the condition require different types of drugs.

It’s challenging and frustrating and it takes a ton of time.

And that’s the answer.

And I hope that in my lifetime there are more treatment options that are free from side effects.

In the next few years, I’ll be able to try Transcranial Magnetic Stimulation (TMS). The treatment is available now, but only to those who can afford the high cost (or the high copays if their insurance covers it). TMS has no side effects and has been effective for a lot of folks. I hope TMS or something like it will some day be a replacement for some of the drugs I take so that I can be finished with some side effects that slow me down (and not in the good way).

So that is the short version of why it takes so long.

And I’m hoping to help the cause of getting better access to better treatments with fewer side effects. Because we need them.

A really great place to start reading about some of the work I support is here:

Hope for Depression

Through my non-profit, Living Broken, I make art to help raise money for the important work of Hope for Depression and other organizations with similar missions.

Because if I want to live a meaningful, productive, independent life, I need to be able to take one step forward without having to take two steps back.

Thanks for listening.

xoxo, d

www.livingbroken.org
Giving power to personal stories of thriving
through wearable, shareable art.

 

 

 

 

 

 

Tell Me Where It Hurts

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Time flies between suicides.

Or at least that’s how it feels these days.

When I heard today that Chester Bennington had ended his life, I immediately thought of Chris Cornell.  And it feels like Chris Cornell took his life last week.

But it was May.

Chris Cornell has been gone since May.

And then in June, Chester Bennington dedicated Linkin Park’s ‘One More Light’ to Chris Cornell during an appearance on Jimmy Kimmel.

And now it’s July and Chester Bennington has joined Chris Cornell in what I imagine is a great band of pain-free rockers in heaven.

I can tell I’m feeling well because I’m not obsessing over the details of Bennington’s death.  I’m not researching story after story, only to reread the same few quotes from close friends or a family spokesperson.

I can tell I’m feeling well because I don’t wish it had been me instead of Chester Bennington. And I don’t think there’s a message in his death that’s meant for me.  I don’t think I’ve been dared to do something similar or to do something that will add impact and meaning to another artist’s death.

But this is the year that I decided to start sharing more about my own journey living with suicidal thinking.  I decided to start sharing in order to start giving back.

For years, I’ve relied on the experiences of others, finding inspiration and hope in their stories and their words. Maybe now, if I give some of that back, someone else can benefit from my experiences.

So let me tell you about what it’s like when I’m not doing well.

Like when Robin Williams ended his life in August of 2014.

I wasn’t doing well that summer. I was struggling with a particularly rough period of suicidal thinking and major depression at that time and Robin Williams’ death really struck a chord.

If you know me in real life, you might be thinking back to that summer and wondering what was going on then to make me miserable.

Nothing.

The answer is nothing.

The answer is always nothing.

I live my life as a high functioning professional and my brain lives it’s life as a chemically and stress-challenged nut.

That would have been a ‘regular’ summer – nothing out of the ordinary except a worse-than-usual brain.

And Robin Williams’ death hurt deeply.

I related to Robin Williams as an artist. I related to the many dark characters he had played. I related to his contrast of humor and high emotion. And I felt like I could understand what it was like to have a life that appeared to be in full swing and yet be suffering with a condition that others could not see or appreciate.

I remember reading so many tweets and Facebook posts that asked how someone with so much to live for could end his life.

#ihatethat #ihatethat #ihatethat

I hate that.

I hate when people connect the quality of one’s life or success with their propensity for suicide. I get particularly upset at the lack of understanding about suicide when I’m feeling suicidal.

At that time, I went to the few people I trusted on the topic and ranted about suicide having very little, if anything, to do with what a person has.

It’s the inability to continue living with constant pain,” I explained to the few people who had witnessed me living with constant pain.

I yelled at television’s morning personalities who went on and on about all that Robin Williams had and questioned why nobody was able to stop him.

And I got frustrated.

Because it’s really hard to help people who don’t live with suicidal thinking to understand suicidal thinking.

When Robin Williams ended his life, I thought it was a message to me. I thought it was a sign that the time had come for me to do it too.  I thought, as I tend to think, that maybe if I left a really good note, people would understand the pain behind suicide better.

That’s something that happens to me that doesn’t happen to normal people.

Normal people don’t feel dared to die.

Sometimes, I get an overwhelming feeling that it should have been me and not the person who died.

In the summer of 2008, we lost a number of household names whose time was not meant to be – and I then spent the summer trying to figure out how I could take the place of someone who didn’t want to die. First Tim Russert, then George Carlin and then Tony Snow. It was a hard summer for my brain. I was certain I was supposed to be a part of the puzzle unfolding before me.

It’s that type of thinking I’m used to because my brain engages in it so freely.

It’s kind of like my brain has a life of its own – a life that has little to do with the normal functioning life people see me living.

I can feel my brain engaging in all of this nonsense and sometimes it is more intrusive than other times.  Like in that summer of 2008 when I could not get a break from the noise in my head.

But now, in times like these, when I’m doing well, I just watch the show going on in my brain and I do a million little things to make sure that my brain doesn’t get too loud or too inappropriate.

When I first began writing about the suicide stuff, it made some people nervous. I think it made them wonder if writing about suicide was actually *the sign* that things were bad.

But no.

Talking about suicide is a positive way of helping to manage the condition.

Writing about suicide is a positive way of helping to manage the condition.

And no, talking and writing about suicide aren’t triggers.

But silence is a trigger. And hiding is a trigger. And keeping secrets is a trigger.

So if you know someone who lives with pain – any pain – get to know their pain. Get to know what they look like, talk like, act like when they’re in pain.

And make their pain part of your routine.

What?!?

Yes, I said ‘make their pain part of your routine.’

Make it part of your routine to ask them how they are doing so you can tell when they’re not doing well.

Make it part of your routine to ask them the questions that lead to information about their condition.

What music are they listening to? What shows are they watching? What foods are they eating?

Are they sleeping at night? Waking up when they should?

Getting out? Exercising? Seeing friends?

My inner circle folks know what my dangerous behavior looks like. So they know to always ask specifics regarding what I’m up to.

Because one day I can look like I’m doing great, but that can quickly turn.

And one last thing.

If you know someone who lives with pain, don’t pretend they’re not in pain when they are  pain.  Ignoring the pain won’t make it go away, but acknowledging the pain can often help.

Well, this essay doesn’t flow all that well, but neither do my thoughts about how to talk to others about suicidal thinking.

Maybe the flow will get better as I get more comfortable uttering some of these hard-to-say thoughts out loud.

xoxo, d

www.livingbroken.org
Giving power to personal stories of thriving
through wearable, shareable art.