Shut the F*ck Up

It’s official. The depressive episode I’m currently experiencing (already seeming ominous by virtue of its classification as “Major Depressive Disorder”) can now add “Treatment Resistant” to its list of attributes. Super.

I’ve given it time, endured some truly hideous drug side-effects, switched medications, endured those hideous side effects (including “brain-zaps” and no, I’m not making that up—you can Google it). But because, despite my patience and perseverance, none of that was yielding satisfactory results (i.e. making me feel something akin to human), my doctor made some changes this week. In response to some unequivocally suckish feelings of not belonging in this world, of being somehow not “made right” to exist here in this world—feelings that had gone from overwhelming to intolerable—we increased the dose of my antidepressant and added an additional medication for anxiety. We did that knowing full well the increased dosage might exacerbate the side effects I was already experiencing or even cause some new ones, but I was willing to give it a try on the off chance it might be the magic recipe that would balance my unruly brain chemicals and help me feel right with the world again.

Day one with the new dose went pretty well. I did feel a little wonky and just a bit off-kilter—dizzy, headachy, not remotely hungry and yes, the brain-zaps did, in fact, increase, but it wasn’t anything I couldn’t handle. Until I started hearing voices. That’s right, I said “voices.” In my head. Again, I’m not making this up, but I really wish that I was.

Did you know that hearing voices can be a symptom of severe depression or a side effect of certain antidepressant medications? It's true. And I have to say, it’s a crock of shit. At a point when you’re feeling unbearably sad, worthless, hopeless and guilty, a chorus of voices inside your own fucking head may just decide to belt out a few versus of “Hey, You Suck!” and invite their friends to join in. The horror of it is incomprehensible and the word “unfair” is far too anemic to describe it.

When I left work that night, I stopped at a local restaurant to get dinner to take home. It was loud in the restaurant and while I waited I became anxious and dangerously close to a panic attack (apparently my anxiety had also increased with the new dose of medication). But I managed to hold it together, pay my bill and make it to the car with my food. I began to cry the minute I shut the car door, but felt a huge sense of relief to be out of the restaurant and in the relative privacy of my car. I was taking a minute to get myself together before I started driving and that’s when I started hearing them. People were yelling inside my head. The voices were loud, critical, insulting, unkind and terribly persistent. So much for getting myself together.

I drove home with the yelling in my head, stopping at the drive-through pharmacy to pick up my anxiety medication (this seeming like the perfect time for it). I was literally sobbing the entire time the pharmacist was dispensing the medication and I became the teeniest bit concerned she would call 911. It probably wasn’t a rational thought, but who can form a rational thought with so much noise in their head?

I got home, took the anxiety medication and waited for the voices to shut the fuck up. But while I waited, I listened. Really listened. And while I listened, I realized something terrible. And what I realized may be the very definition of a rude awakening. (Truly, if you look up “rude awakening” in the dictionary, you might see my picture. I’ll be the one grimacing and holding my head.)

So here’s the thing: it turns out the voices are mine. Every last one of them. The voices I would have sworn were people close to me, people I love and respect, the voices I would have sworn were you, weren’t you at all. The words they were saying were things I’ve heard from others. Awful, hurtful, dreadful things, but the voice delivering the words was mine alone. My voice, cruelly turned up to 11 by a quirk of my brain’s faulty wiring.

Perhaps it makes a certain amount of sense that the voices are all mine. Because while the people who spoke the words to me are most certainly responsible for their hurtfulness, thoughtfulness and cruelty, I alone am responsible for hanging on to those words. It’s a character flaw of epic proportions and one I’ve spent a lifetime trying to regulate. And although I’ve made progress, this incident has provided a vivid (Technicolor really) example of how far I have yet to go. Those words are still right there, exactly where I left them, ready to hurt me again whenever my faulty brain allows it. And my brain will even deliver the words in my own voice. Damn it.

It should take about a week to see how this combination of drugs will affect me and whether or not the side-effects will subside. I’m willing to ride it out, but if you have the misfortune of running into me in the meantime, you might want to give me a wide berth. You can’t be sure right now how many people I might be carting around inside my head.

And while you’re giving me a wide berth, I’ll be working on some coping strategies. Before the kids left for their dad’s house, I took these pictures of them. I told them they were for an art project I was working on with no further explanation and after five days at their dad’s it’s unlikely they’ll remember to ask about it again. These pictures remind me why I’m here should I have a moment when I forget. They remind me that I am, in fact, “made right” for this world. And so are they. I have them taped next to my bed.

 

Maggie taped two lists by my bed as well. One reads: The Voices Are Wrong and lists people who love me. I am grateful beyond measure that the list is so long. The other is Things Lori is Good At (In No Particular Order). Obviously parallel parking is on the list, but some lesser-known skills are there as well such as lifting things, making beds and helping people see that they are important (I especially like that one). And finally, I taped a picture of myself next to my bed, all the way by the wall and kind of close to the floor where no one can see it but me. It’s a picture that Lucy took of me the last week with a two-year-old Valentine taped next to it. The Valentine is from a dear friend and I carry it with me all the time. It says, “Beautiful and Good.”

I figure if I’m going to hear voices, I might as well encourage them to say something nice. Because especially when it comes to voices in your head, if they can’t say something nice, they really should shut the fuck up.

Down the Rabbit Hole

Today I have health insurance. There’s a sentence I haven’t been able to say for the last three years. I recently convinced my employer to purchase health insurance for me and to say that I feel relieved would be the mother of all understatements. For three years my access to health care has been minimal. Routine tests and check-ups I once took for granted have not been possible and perhaps most notably, my chronic depression has gone untreated.


A couple of years ago, during a particularly difficult time, I scraped together enough money for one visit to a therapist I had seen previously. We had a frank discussion about the dangers of leaving chronic depression untreated. She described my baseline of depression as something that would not go away without treatment. Period. But she was more concerned about major depressive episodes left unchecked. She described it as my depression going through periods of relapse and remission, but progressing with each cycle. In other words, every time I went down that rabbit hole, I went a little deeper and came up just a little short of the top when I climbed back up. She advised me to begin taking anti-depressants, which had worked well for me in the past, and never stop once I found a medication and a dose that worked well. I didn't disagree, but when you’re uninsured and on a limited budget, that’s easier said than done.

Unfortunately, even when I found medication I could afford, without health insurance there was never room in my budget for the doctor’s visits necessary to monitor it and keep the prescription current. And when I tried to find low-cost options, I could never quite make it through the requisite maze of programs not accepting patients, calls not returned and waiting lists. I would set out with the best of intentions, but lose steam, my nerve and sadly, hope before ever finding the help I needed. The devil is in the details and those details are kryptonite for those who suffer from depression.

But today I have health insurance and not a moment too soon because I’ve fallen down the rabbit hole again and I really, really want to get the hell out of here. Quite frankly, it sucks down here.

Armed with my shiny, new health insurance, I visited a psychiatrist a couple of weeks ago to begin the process of finding a medication to help me out of this place and keep me from coming back. Side effects of these drugs can be incredibly difficult and often appear right away, so I took a deep breath and steeled myself before I began the medication she prescribed. As if on cue, two hours later my heart began to race, my anxiety increased, I shook uncontrollably, lost my appetite entirely and felt horribly nauseous. As it’s not my first time at this particular rodeo, I knew I should give it ten days to see if the side effects would abate, so I put my head down and rode it out. Frankly, I find it to be an inexcusable flaw in these drugs that side effects present immediately and with the force of a ton of bricks, yet the positive effects take weeks to notice at all and even then, build slowly over time.

It took all ten days—ten seriously crappy days—but nearly all the side effects have subsided now. My appetite hasn’t quite returned, but I’m no longer nauseous and most things have stopped tasting terrible. It’s a world gone mad (or perhaps brain chemicals gone mad) when I find red wine repellent.  That god that's over and I’m back to “just” a deep depression complete with confusion that makes me wonder if I’m crazy and anxiety that too often rises to full-blown panic attacks. But with any luck, relief is a mere three to seven weeks away. (Thank you Forest Pharmaceuticals.)

I’m what’s known as a high-functioning depressive. I keep up appearances, do what’s expected of me. The casual observer would never know the shit-storm that’s going on inside my head. The luxury of a breakdown is something I simply can’t afford, and let’s face it, who among us can? The perfect piano recital dress isn’t going to find itself, and 30 elementary school kids aren’t going to produce a yearbook on their own, and, and, and. We all have so many “ands.” Keeping up appearances is exhausting, however, and the relationships on which I most I depend can suffer as a result. I consider those closest to me a safe place to stop pretending to have it all together, to cry or hide, or not talk and have that be OK. But while I’m reveling in the relief of letting my facade slip, those closest to me can feel neglected or even rejected. It’s a seemingly impossible dynamic, but one I feel powerless to change.

Because down in this rabbit hole things are strange, painful and confusing. I feel like I’m shrinking down here, literally folding in on myself. It’s as if I’ve pulled in all my exposed parts and I’m holding all of “me” close for protection. This is how I’ve always done it. It’s a skill, really. A skill born out of necessity from years without treatment, as a teenager because I didn't understand what I was dealing with and as an adult when I’ve been unable to afford what I need. It’s the only way I've ever found to live down here. I fold myself up, grit my teeth, clinch my fists and focus intently on the details of simply getting through my day and caring for my children. I’m afraid, though, that once I’ve folded myself up really tight and small, I must seem unreachable. I’m still here, though. I'm right here.

But if it seems that a piece of me is missing—that there’s somehow less of me right now—it might be because I’ve given that piece of me to Ben and Lucy for the time being, so that they know they’re safe, protected and loved. Or maybe I’ve folded that piece deep inside myself for extra strength. I hope to climb back out of this rabbit hole soon. To grow back to my regular size. When I do, I may be a little worse for wear, but I’m sure those who love me won’t mind a few new battle scars… any more than I mind theirs.

And if you’re down in a rabbit hole of your own, fold up as tight as you need to—I’ll still know you’re there. And hold on tight to you. You’re stronger than you realize. We all are.

I'm Not Sad...

...I'm depressed. Those are not the same. 


A year ago I wrote here about suffering from depression in a post called "Off My Meds". In the year that’s gone by since I wrote that piece, a lot of truly wonderful things have happened in my life and I have felt many moments of true joy. Friends are pleased to see me happy and assume that my depression is held at bay by that happiness. And I let them believe they’re right. The truth is not what they want to hear. “Now that these good things have happened, isn't it wonderful to not be depressed anymore? Isn't it a huge weight off your shoulders?”

And I say, “Yes, of course it is.” Because if I was still depressed, that would be wrong…right?

What people who don’t suffer often don’t understand is that depression simply doesn’t work that way. What people who don’t suffer often don’t understand is that I’m depressed, not sad.  Do I feel better when wonderful things happen in my life? Of course I do. But do I also still feel like I’m clawing my way out of a hole much of the time? Am I sometimes paralyzed with worry that I’ll ruin everything I touch (most terrifyingly, my children)? Am I racked with guilt for no discernible reason?  Honestly believe that most everything is my fault? Fight overwhelming urges to hide from the world? Sadly, yes. Because depression is not the same as sadness and it doesn't go away as easily. Maybe it never truly goes away at all. 

And I’m ashamed to admit that I have, at times, apologized for those feelings when I know that truly, I should not. Depression is not a weakness. It is not something for which anyone should apologize. My "apology" for suffering from depression can be found in the way I live my life and in the way I raise my wonderful children. My apology can be found in the strength of my character. My apology can be found in my desire to make a difference in the world. The way in which I "apologize" for my depression is, quite simply, to carry on with the business of living.

Do I still feel as if I’m hanging by a thread much of the time? Yes, I do and I will not apologize. But maybe I’ll learn to cling to my thread with a little more grace and even a bit of style. And just maybe I can even help you do the same.

A year ago I wrote here about suffering from depression. And in that piece, I wrote about feeling like I’m hanging by a thread. Many people reached out to me after I published that post and I identified with so much of what they wrote to me—each e-mail touching me more deeply than words can express. But one particular friend wrote something to me that truly struck a chord. She wrote, “I really, really like what you've done with the thread you're holding onto – it’s multi-strand and colorful, with a hint of glitter.” I have given that statement a lot of thought over the past year.

It’s easy to see that the strands of the thread I hold onto are my children, friends and family, as well as the many facets of my life, but this sweet friend’s words made me realize it just might be that hint of glitter in my thread that gets me through most days. And when I thought about it, really thought about it, I realized that hint of glitter is nothing more than "me" showing through. It's the light, the “oomph, ” the indefinable something special, that lives in all of us, if we just remember to look for it.

This same friend mentioned to me recently that she had been clinging to her own, non-glittery thread of late. So I sent her some sparkly thread in the mail - a reminder to look for the light inside herself. The light I can see so clearly.


And then I thought of another friend who might need a hint of glitter in her thread, so I sent her some too. Then I thought of another friend. And another. So I went back to the store and I bought more thread. If I send some to you and you don’t need it today, hang onto it for a day when you do (it's good to have on hand). Or pass it along to a friend who might need it right now.


Maybe if we all took just a little extra time to not only look for the light inside ourselves, but also to recognize and honor the light in each other, the world itself might seem more welcoming and supportive, more understanding…more kind. And maybe just a touch more glittery.

Who knows what might happen if we all stopped apologizing and wove a hint of glitter into the thread we’re hanging by.

Off My Meds

I suffer from depression. Deep, dark and chronic. And I have for most of my life. A recent study reveals that 40 million Americans sought treatment for depression in 2009. But most people don’t talk about it. Despite its prevalence, depression still holds a stigma and I’m afraid I’m guilty of furthering that stigma.

I’ll talk about autism until I’m blue in the face.  I've written about autism, about drinking too much, bad dates and my sometimes questionable parenting skills.  Hell, I've even had to explain what butt-beads are to my 70-year-old mother as a result of things I've written in this blog.  Yet I’ve never written about my depression. Most of you could probably guess that I suffer, but I’ve certainly never said it here. So here goes – let’s talk about the elephant in the room, shall we?

I can trace my first depression back to 8th grade. I went down hard – my grades plummeted, I alienated friends, lost interest in things that had once mattered to me. I had no idea what was happening. My parents and school officials assumed I was on drugs – the symptoms certainly fit. I was sent to a different school in the hopes that would cure me of having fallen in with the wrong crowd. I didn’t feel any different, however, so I simply began to pretend. I pretended to be happy, pretended to feel normal, pretended to care so that I could get along, fit in and fly under the radar. That first depression eventually lifted on its own and I was able to get back to something resembling normal.

But it never stayed away long.

Over the years depression has come and gone in powerful waves that crash through my life with wanton disregard for whether or not I feel up to surfing. I’ve been to therapy. I’ve taken anti-depressants. And when neither of these options is available to me (most often due to a lack of money) I’ve used my self-devised Just Keep Going Plan.

The Just Keep Going Plan has evolved over the years and has several components, but perhaps the most important part of the Just Keep Going Plan is to leave the house and go out where the people are. And not just go out where the people are, but talk to them. Look them in the eye. Smile at them. Ask them about their day. Tell them I like what they’re wearing. Engage them.

The Just Keep Going Plan has brought some wonderful people into my life. I occasionally get a beer with the checker at my grocery store. She has two beautiful daughters close to my kids’ ages. They’ve played at my house. Her husband bartends at a local restaurant I frequent. My kids hug her when we buy our donuts on Sunday mornings and we give her a holiday card every year. Kelly would notice if I failed to “keep going.”

The mail carrier at my old house has an adult son with autism. His son struggles mightily to navigate society as an adult and has lost jobs and been kicked out of schools. But he was recently accepted to a good college and is flourishing. We talk about his son’s struggles and the toll it takes on his family. My mail carrier once gave my kids a box of chocolates when we were walking home from the bus stop and then parked his truck to help me when Ben’s dropping them on the ground caused a tantrum that would have been difficult to handle on my own. Gene would notice if I failed to “keep going.”

Facebook has allowed me to "go out where the people are" in a slightly different way.  I went to high school with Deanna, but I hardly remember her from that time. When she sent me a friend request, I had to look her up in my yearbook. But the feeling of not knowing Deanna didn’t last long. She commented on my posts – always with the most encouraging and positive advice. I'd like to think I did the same for her. She had read about my Ben on Facebook and here in my blog and was raising a very similar son herself. She asked if we could talk on the phone about our boys and their unique needs and strengths. I said yes and a true friendship was born. We talked about our boys, to be sure, but we also talked about everything else. She shared my optimism when I was excited about a new romance and gave me wise and patient advice when that same romance went terribly wrong. And when she discovered she was ill, we talked about that. We talked about death. Her death. And what it would mean for her son. We even talked about God and her incredible faith and devotion, even though she was fully aware that my belief was shaky at best. She never preached. She never judged. Sometimes she cried. Sometimes I did too. I miss her terribly. Had she lived, Deanna most certainly would have noticed if I failed to “keep going.”

The Just Keep Going Plan is based, in part, on pretending. Not pretending to be better than I am, or someone I’m not. But pretending, some days, to be happier than I truly am. Pretending to be more hopeful than I actually feel. And just maybe helping others to feel happy and hopeful as a result.

It’s rooted in seeking attention. But not by behaving erratically, drinking too much, being promiscuous or engaging in other dangerous behavior. Seeking attention by offering attention. Noticing people, helping them feel good, thereby helping myself feel good.

Pretending, faking it, seeking attention – all things I did in negative ways when I suffered from depression in my teens – are now the same things I’ve turned to my advantage, and hopefully to the advantage of those who know me. Maybe it’s true that we should stick to what we know. But who’s to say we shouldn’t tweak what we know? Mold it, bend it to our will. Make it work for us?

A young friend who also suffers from depression said to me recently, "You're beautiful, smart, funny and have everything going for you and you're still sad.  What hope is there for me?"  I fought back the inclination to disagree with her very flattering assessment of me and told her there's hope for her because there's hope for me.  There's hope for all of us.

It’s not been easy, but I believe I am making it work for me - I believe there is hope for me. Day by day. Sometimes hour by hour. Even if I’m hanging by a thread, I have no intention of letting go. And while I’m hanging here, holding onto my thread, I notice you holding onto yours. And I appreciate you. And I can see that you matter.

And when I notice you and appreciate you and see that you matter, I know that I matter too.