Not asking for a parade

Being in the throes of mental illness is horrible. Recovery, however brief, feels like breaking through the surface of a frozen river. You are no longer drowning. You are no longer being pulled away from yourself. You can breath.

It is a miraculous thing to recover from a mental illness. Yet, very few people are aware of this miracle, and even fewer understand the courage, stamina and belief in oneself necessary to pull it off. Mostly, people are just relieved that we’ve stopped acting like someone else and started being ourselves again. Mostly, people want to wrap up the “sick” part of our lives in a box with a neat, little bow and put the box way back on a shelf where no one will ever see it again.

The problem with this charade is that the “sick” part of our lives was our lives. We were never acting like someone else. That was us. That is us. At best, we will only every be recovering. We will never not be ill.

For a friend or a loved one to deny this fundamental truth about our identity is to reject us as a whole. You cannot love parts of a person. You cannot pick and choose. You either love someone entirely or you do not love them at all.

If you choose to love somebody recovering from a mental illness, please do not seem unaware of our heroism. Do not treat us as if we are or were just mentally ill. Recognize that we have fought for our lives, just as people with any number of other illnesses do.

Personally, I am not asking for a parade, a party or even a card. I am asking to be accepted as I am, both well and unwell. I am asking for recognition of my struggle and my victory, however fleeting or long-lasting it might be.

One Week

It has been one week since I stopped taking the last med prescribed by my former psychiatrist that is counter-indicated for my illness. While my episodes of hypomania and depression became severe and rapid-cycling in 2015, I am on day seven of being both properly diagnosed with bipolar disorder 2 and properly medicated. I feel hopeful and devastated, thankful and furious.

While I still feel somewhat fragile, my mood seems to be settling down somewhere near where it used to live. I am still prone to emotional outbursts, both sad and angry, but those outbursts occur less and less often. The other day I put on make up for no particular reason, something I have not done in close to a year. I have laughed until I couldn’t breathe at something my husband said and at something one of my children has done. I make jokes. I can’t remember the last time I laughed, or expressed any happy emotion, spontaneously and without it feeling at least a little bit forced. I am reading books that are not for my children and are not about bipolar disorder. I listen to music and sometimes I even dance a bit around the kitchen. My husband and I are going to a concert in two weeks, our first since L and C were born. I think about going back to work, not in the near term but as an actual possibility to be considered. All of these things give me hope. These things also devastate me.

I am devastated by the days and months and years I have lost; by the moments I missed because I was to anxious or angry or depressed to be present. I am devastated that I don’t remember a great deal of L and C’s first two years, not in a “two newborns and a toddler whirlwind” sort of way but in a “I have no memory of significant spans of time during which I was ill but not properly treated” sort of way. I have wept over baby book entries I could not complete. And H, I am devastated that he is old enough, has been old enough all along, to remember what these years have been like. I am crushed by having been truly mean to him, by having frightened him with my instability, by having pushed him to his father when he came to me because I just could not do it. I am also devastated by the toll my illness and my ongoing recovery have taken on my marriage and my husband. I have suffered and he has had to watch. He has tried to help and I have rejected his offers, angrily insisting he read my mind and provide me with something else entirely. Writing about these emotions and events wrenches my heart and makes it difficult to breathe. But this is what happened. I can’t change it. My only and best option is self-compassion.

Thankfully, self-compassion is one of the many new skills acquired during my intensive outpatient treatment and therapy since leaving treatment. Also helpful are self-differentiation, boundaries and value-based living. But self-compassion, loving myself regardless of what I do or fail to do each day, whether as a mother, wife, patient or human, is by far one of the most important (and most difficult) lessons I have ever learned. Honestly, it’s still a work in progress, but I’m getting better, and I love myself even if I’m not. I am thankful for the many healthcare providers who did their best to keep me safe along the way, even if they didn’t get it exactly right. I am particularly thankful for my last therapist, who steered me finally in the right direction. Thanks to her, I now have both a psychologist and a psychiatrist eminently qualified to treat bipolar disorder 2. Thanks to her, and to my new psychiatrist, I have been taking the proper medication for my condition for seven days.

However, the fact that it took just under two years for me to get to this place of near stability is infuriating. How many fucking PhDs and M.D.s does it take to properly diagnosis and medicate a single person? More than it should, my friends, more than it should. I spent over a year being treated for “treatment resistant postpartum depression” which I did not have. I spent nearly two years being prescribed medications that made my actual illness significantly worse. My panic attacks and, likely, many of my hypomanic and depressive episodes were triggered, at least in part, because of my medication. Because I did what my doctors told me to do, I got sicker. And sicker. So sick that I came much closer to the edge than I would like to admit, particularly as a mother. Bless whatever small part of me was able to pull back and run the other way in search of help. Of course, the help properly diagnosed me but failed to properly medicated me and sent me back to the same doctor who screwed up to begin with. But, I could have said no. I could have asked more questions. I could have said this doesn’t seem right; I don’t feel like I’m getting better. But I did not do those things. I just kept going, trusting that, eventually, the motions would get me home. And so they have, at least they’ve gotten me damn close.

I have felt better before. There have been days in a row when it seemed everything was finally, mostly okay again. But it wasn’t. I am hopeful this is not one of those times.  Given the hellish medication changes I have gone through to get here, I think this time will be different. We may need to tweak things but, fingers-crossed, the worst is over. Of course, I still have much to learn about managing my symptoms and avoiding or minimize future episodes. And I still have to mother three toddlers and be a wife and figure out what to do about work and about a million other things. But for now, I am just going to be here in this unfamiliar place of near normalcy. It’s been a long time coming.

Photoshopped Postpartum

I f*ing love Beyonce. She is amazing. She is a queen. On stage and off, with her equally worshipful husband or solo, Beyonce is a model of intelligence, self-confidence, passion, hard work, artistic vision and flawless execution. Having undergone fertility treatment myself, I adore that both she and Jay have been forthright about their struggles to become pregnant. When I heard they were having twins after having Blue Ivy the same year we had our first born/singleton, I joked with my husband that he should offer Jay-Z some parenting advice via twitter. I felt like we had something in common, a significant shared life experience. Then, I remembered she was Beyonce and shook my head at myself.
When I first saw the picture of Bey with her twins making their one-month debut, my reaction was: (a) Yay, we get to see the babies!; and (b) What’s with the hippie/bridal/beach theme? Then, I started remembering what my life was like during the first few months of twin motherhood. What a hilarious comparison, I thought to myself, as I created a collage and posted it on Instagram and my Facebook page, both of which link to this blog.
I hadn’t planned to write a post about Beyonce’s picture with her twins (“The Pic”) but the more likes my photo collage received the more I wanted to write something substantive, rather than just making a sarcastic comment via Instagram.
Beyonce, like all of us, may take and post whatever postpartum pictures she wants to. She does not owe her fans, or women generally, a message of mutual support or camaraderie. Being a pop star and a billionaire does not make her responsible for providing helpful or hopeful imagery for new moms, particularly moms struggling with the (usually) overwhelming experience of having multiple newborns at once. Likewise, she has no obligation to consider the 1 in 7 (or more) women who suffer from some kind of postpartum mental illness, be it depression, anxiety, OCD or bipolar disorder, to name a few.
But she did have an opportunity. She had an opportunity to show the world a realistic, relatable image of new twin motherhood. This is not what she did. The Pic presents an unachievable, not relatable image of early motherhood and, particularly, early twin motherhood. It is essentially photoshopped postpartum. It is an opportunity lost.
How much more positive and fun would it be to see a picture of something real from the Carter family’s first month with their twins? Beyonce holding up the ridiculous pillow you have to use for tandem nursing, making a WTF? face. Or, a picture of the gazillion bottles required for back to back to back feedings of two newborns. Or, one of Bey and Jay all but passed out on their couch, each wearing a burp cloth and holding a baby over their shoulder.
I realize she has a brand to maintain, a brand of glamor, fantasy and flawlessness. But she has also endeared herself to many of us by being open, honest and funny. By revealing, if only for a moment, that she has enjoyed some of the same goofy things we enjoy (see using your foot as a telephone; wearing ugly Christmas sweaters) and experienced some of our same heartbreaks (see Glory; Lemonade; 4:44). Personally, I wish she had done something open, honest and funny with her debut picture of her twins. Regardless, I still think she’s an amazing woman. And I wouldn’t be surprised to see something less beach goddess-y and more poopy diaper-y down the road. There’s no predicting anything when it comes to Queen Bey.

 

How I got here

Recently, my therapist and I discussed my past failures to assert myself in decisions that greatly impacted my life. I failed to state that I did not want something; that I would not do something; that the impact of a particular decision was unacceptable to me. I have also failed to state that I did want something; that my want was valid and important; that compliance was nonnegotiable.

My therapist seemed genuinely baffled that a woman of my age and intelligence, with a seemingly good sense of her own best interests, would not reject the harmful and demand the helpful as a matter of course. She asked me why I did not protect and advocate for myself in these basic ways. I had no answer.

Since our session, I have thought and googled and thought some more about this issue.

Am I afraid of rejection? That seems to be the most common reason cited by internet psychologists. But would I truly accommodate someone by going along with a decision that I believe is wrong or potentially harmful to me to ensure that I am not left alone? Would I fail to tell someone I want something out of fear that simply asking will make that person leave me?

Probably, yes.

Or, is it guilt? Would I accept the potentially harmful consequences of a decision because I feel I owe the other person the sacrifice of my physical or mental health? Would I silence my wants because my past bad acts make me feel like I am not entitled to ask for anything ever again?

Again, yes.

Maybe I am just weak, not emotionally strong enough to endure the vulnerability of saying either no or I want something from you to a person I love. I have rarely said either of those things to any loved one ever. I do what is asked of me and I accept what I am given. I have taught myself that this is enough.

It is not.

My failure to recognize my fear, my guilt and my passivity likely cost me my mental health and my career, at least for the past few years and for another one or two years to come. It is highly likely that, with proper medication, therapy and self-management, I will be able to recover my mental stability and my life. But the kind of life I recover depends on me.

Although I am nearly 40 years old, there is no reason I can’t live my life differently moving forward. The only things in my way are my own fear, guilt and weakness. I cannot be deterred by these sentiments any longer, no matter how difficult or uncomfortable moving beyond them may feel.

It is so late in the game there is no place for fear of rejection. I am either going to live my life for me or for someone else. If I choose me, rejection by another becomes irrelevant. Likewise, guilt must be thrown away, like a pair of shoes that no longer fits. There is no point in continuing to burden myself with something that cannot be changed. What’s done is done; leave it and move on. Finally, my weakness must be replaced with strength, the emotional strength necessary to endure vulnerability, to risk being left or let down. Because, in either case, I will learn what I have and do not have in my life. I will learn that I do or do not have enough of what I want. And then I can go out and find what I know I am missing, probably what I have been looking for all along.

 

 

What is true?

As a person with mental illness, I struggle daily to distinguish between what thoughts, emotions and actions are truly mine versus symptoms of my illness or side-effects of my medications. Did I just raise my voice to my son because I believe he did something significantly wrong? Or, did I do it because I’m hypomanic and, therefore, super irritable? Or because I am tapering a medication, which has significantly increased my anxiety? Which one is it? Or, is it all of the above? Some? Many days, I have no fucking idea. These collective days have eroded my confidence, my sense of self, my ability and desire to be present in my life and my hope for the future.

The last two weeks have been excruciating due to tapering a medication (I think). We started by cutting my dose in half and I have felt nothing but raw, burning anxiety and suffocating depression. Or maybe these feelings are attributable to a mixed-state episode (i.e. hypomania and depression at the same time). There really is no way to tell the difference. All I know for sure is that I feel more “sick” than I have in over 7 months. I feel like every single bit of progress I have made toward minimizing the symptoms of my bipolar disorder has been lost. And I have acted horribly because of how I feel.

I am constantly irritable and have little to no patience, so I do not behave as a have and should towards my children. I get upset about the smallest transgressions and I am quick to say no to every request that I feel would be too much for me. Sometimes I yell. I have no tolerance for messiness or loudness or things that are not safe (which is pretty much everything in my addled mind). But messiness and loudness and doing things that may not be safe, but won’t cause serious harm, are inherent parts of childhood; these are things that parents live with everyday and ignore, within reason, because they are part of the package of having tiny little humans that you love with all your heart. But I can’t see that most days. Or, worse, I can see it but I can’t stop myself from getting upset anyway.

I have also be consistently down, negative, unhappy, tearful and hopeless. I am always upset, never light-hearted. I refuse every request to try something new. I don’t want new. I don’t want old. I don’t want anything except to hide from my family and the rest of the world so that I don’t have to feel my feelings, so that I can pretend, if only for a few minutes, that I am alone in world, without the responsibility to care for or love anyone.

My rational self knows and understands that my thoughts, emotions and behaviors described above are the result of a medication change and/or my illness. But other parts of myself can’t understand that, or hold on to that understanding. Instead, I feel that my emotions and behaviors are me, true illustrations of the person I really am. I feel that I am a horrible mother, that I should not have had children because I cannot care for them properly or love them as they deserve to be loved. I am heartbroken that my behavior has harmed them and will continue to harm them far into their futures. I apologize constantly, but that is not enough. They are too young to understand why I would do such things in the first place. All they know is that their mommy isn’t as nice to them as she used to be, that maybe she doesn’t love them as much as she once did.

Again, I read over the above paragraph and I know that those sentences are not true. I am not a horrible mother. I am a good mother who loves her children fiercely, who still manages to comfort them in the night despite her powerful sleep medication, who kisses every ouchie and sing songs (off-key) whenever requested. I never miss the morning routine, dinner, bath time or bedtime. I clean their clothes and make sure they haven’t outgrown their shoes. I manage their school supplies and their doctor visits. Even at my worst moments of illness, I do these things, and more, because I am a good mother who loves her children. That is the truth about me and my life, whatever my illness or meds might make me feel. But my truth is not stable. It is vulnerable and tenuous.

If I am going to survive living with this illness, I have to hold on to my truth. I have to build it up, put a wall around it and defend it with all the mental strength I have left.

I have an illness but it does not have me. I am still the one in control of my life. I will not surrender. I will fight for who I know I truly am. I will do it for my kids, my spouse, my family and my friends. I will do it for me, because to live my life in any other way would not be a life worth living.

Empathy is hard but also necessary

I’ve been thinking, and talking, quite a bit about empathy lately. Specifically, the difference between empathy and sympathy. According to Psychology Today’s website,

Empathy can be defined as a person’s ability to recognize and share the emotions of another person . . .. It involves, first, seeing someone else’s situation from his perspective, and, second, sharing his emotions, including, if any, his distress.

In contrast:

Sympathy (‘fellow feeling’, ‘community of feeling’) is a feeling of care and concern for someone, often someone close, accompanied by a wish to see him better off or happier.

* * *

However, sympathy, unlike empathy, does not involve a shared perspective or shared emotions, and while the facial expressions of sympathy do convey caring and concern, they do not convey shared distress.

Similarly, according to the grammarist.com:

When you understand and feel another’s feelings for yourself, you have empathy.

* * *

When you sympathize with someone, you have compassion for that person, but you don’t necessarily feel her feelings. For instance, if your feelings toward someone who is experiencing hardship are limited to sympathy, then you might have a sense of regret for that person’s difficulty but are not feeling her feelings as if they’re your own.

Up until now, my concern with these different emotional states has been self-centered. I have focused purely on my desire to have others empathize, rather than sympathize, with my situation (i.e. being diagnosed with late-onset bipolar after a year of unmitigated hell; having my trauma and newly diagnosed chronic illness lead me to step away from my successful career as an attorney; feeling like a failure for not being a working mom; feeling like a failure as a mother for not doing every little thing, with patience and kindness, but instead having days of hypomanic screaminess).

These are all significant, big-life-picture emotions that I would like the people closest to me to share. I want them to stand in my shoes, to the extent possible, and look at the world as I see it. To share in my fear and distress as if these were their own feelings about their own lives. And to love me, forgive me and speak with me from that place of shared experience.

Feeling sadness for me because of my current situation is not good enough. It is isolating and dismissive. It suggests that the upheaval I am experiencing is mine and mine alone to try to understand and deal with. The sympathetic person may cheer me on from the sidelines, but he remains removed from my struggle. There is no mutual effort to combat my emotional demons, because I am the only one who knows what they are.

In short, I would like my closest people to make an effort to empathize, rather than sympathize, with my situation. I would like them to learn as much as possible about my illness, to listen to me talk about my depression, my hypomania, my fears and my shame. And then I want them to try as hard as they can to put themselves in my shoes, to look at the world through my eyes using my mind; I want them to see and feel what it is like to be me. 

Then, and only then, can we have a meaningful conversation about how to go on.

Without detracting from anything above, I recognize that empathy cannot be a one-way street. I cannot demand empathy from people without haven empathy for them, without putting myself in their shoes when faced with my request.

I need to feel the difficulty and frustration of trying to share the experience of mental illness when such an experience is totally foreign; and when the person requesting empathy is unable to fully communicate her own experience.

I am often at a loss for words to explain what it feels like to walk around with my mind doing what it does. Frequently, there are not adequate words to communicate how mind-numbingly dark, hopeless and repetitive depression is. Nor are their words for the tortuous struggle between wanting to feel “normal” and do “normal” things and never being able to because your anxiety makes the world feel like a giant fist pressing down on your chest until you die. And the shame. There is so much shame in knowing that from the outside you appear to be an otherwise functional human who is choosing self-pity, to give up, to be a pessimist, to run away, to hide, to give in to fear rather than face it. And there is the shame of knowing these outside impressions are not true, yet sometimes believing them yourself.

Conveying all of these feelings in a coherent way to a person with no direct, or even indirect, experience with mental illness is extremely difficult, if not impossible. But if I can’t explain my experience, how can I expect another person to empathize with me? Such a request would likely feel like an unfair, impracticable ask.

And, if I can’t explain my experience of mental illness in a coherent way, being with me must feel incredibly frustrating. Looking at me from the outside, with none of the internal context, it likely feels like I am a determinedly negative person who fails to appreciate what a wonderful life she has, no longer believes in herself, is afraid of her own shadow and constantly wallows in her illness. None of those things are true, but I can understand how a person might have those feelings based on how I act sometimes.

Even if my experience with bipolar disorder could be adequately explained, I expect it would feel incredibly painful to have to share in my distress. No person wants to see someone they care about hurt, let alone experience that hurt with them. Trying to avoid this pain would probably be most people’s first reaction; I know it would be mine. 

But I also know, from past experience, that my first reaction would not be my final one; that I would do whatever painful work needed to be done so that I could share my friend or partners’s painful experience and emotions. That is what humans do for the people they care about.

I understand that people have varying degrees of empathy, and while the ability to empathize can be improved, such improvement is not an easy or fast process. Asking someone to fundamentally change the way they act in relation to other people’s negative emotions, is not a small request. Even so, I believe it is a reasonable one, something I have the right to ask for from those closest to me. 

In short, do not bring me a casserole. Instead, come sit with me, hold my hand, listen, ask questions, say you are proud of me, ask how you can help. Be there with me, not just physically but emotionally, too. I need you to be in this with me, no matter how hard that might be for you.

There are no words

I have read a number of stories, blog posts, etc. about Chris Cornell and depression over the past few days. His death is an incredibly sad cultural loss and personal loss for his loved ones. It also exemplifies the simple truth that depression is indiscriminate. It does not affect a certain type of person; it is not the result of a character flaw or a lack of personal ambition; it does not care what you have achieved or how much you are loved. It is an illness caused by a chemical imbalance in the brain, a chemical imbalance that exists among millionaires and rock stars as well as the people who live next door. It effects the moms and dads and grandparents and teenagers who you know and even love. It is so much more common than you realize. Knowing this fact, really internalizing it, is a very important, powerful step towards de-stigmatizing mental illness and providing true support, even empathy, to those who suffer from it.

Even so, simply recognizing that depression is an illness is not enough. We need you to believe that depression is not something that can be “fixed” through personal effort or optimism. We need you to acknowledge that dealing with depression requires serious, often long-term treatment. It also requires fucking hard work just to survive. Many people who suffer from depression, myself included, put in more emotional work just to get to “normal” each day, than many people expend simply living their lives.  Having someone we love truly believe these truths about depression is an incredibly validating experience. It makes us feel seen and heard. It makes us feel less alone.

I have found the most difficult part in bridging the gap of understanding between myself and my loved ones is my inability to adequately describe what my depression feels like. Yes, it is caused by a chemical imbalance, but an imbalance that doesn’t cause any adverse feelings would be irrelevant. It is the feelings caused by the imbalance that make depression what it is. And those feelings are different for each person. However, in an effort to give some sense, some words to what depression can be like, I offer up my personal experience and feelings:

  • Depression takes me back; it examines every mistake I’ve ever made and forces me to physically and emotionally experience those past events. I feel the chest tightening, heart-wrenching pain of every loss. I feel the waves of shame starting in the pit of my stomach, traveling through my chest and then my face. I examine every major decision I ever made and sob at the imagined joy I may have missed.
  • Depression critically examines my current life circumstances and meticulously points out every area in which I am failing. It tells me, viciously and repeatedly, that I should be a better, more patient and loving mother who spends more quality time with her children. It tells me I spend far too much time on the mundane tasks of day-to-day household management rather than with my family. It make me feel like an inferior partner to my husband, who I now depend on financially; that I ask too much; that I don’t contribute enough; that I am a burden; that eventually he will leave me.
  • Depression also robs me of hope for the future. It tells me that my pain and regrets will never go away. I feel as though nothing will ever change or get better; that I will spend the rest of my life feeling overwhelmed by mothering three children, satisfying my husband’s emotional needs and keeping my own head above water. Depression makes me feel like no matter what treatment I seek, or how religiously I adhere to any doctor’s recommendations, I will never feel better, not in a sustained way.

Depression makes me feel all of the above, day in and day out, nearly everyday of my life. It is exhausting. It feels so unfair. Even though I know it is not my fault, even though I constantly preach that message, I still feel like it is my fault much of the time. How can I not? It is my own mind after all. Why can’t I just control it?

But I can’t, I can’t control it, or stop it, or fix it. Believe me, I’ve tried. Depression is part of who I am. It always will be. It is my monster. My internal demon that I will never be able to truly share with anyone else. I bear the burden. I will carry it, always. I will carry it as far and as long as I can.