I have debated long and hard about sharing this, but in the end my passion for increasing awareness on behalf of my children won out.
I have a child with serious mental illness.
He sees a psychiatrist, takes psych meds and we have discussed inpatient treatment. I believe it’s just a matter of time before that happens.
He is also a leukemia survivor and has other complex medical needs. His mental health concerns are nearly as challenging as his physical health problems.
Yes, for us, his mental health needs are nearly as challenging as cancer. Let that sink in.
We are not alone. Other families face serious mental health issues in their children. We’re a quiet bunch because there is still so much stigma attached to mental illness and medicating kids. Many people believe it’s just a discipline or behavior problem which should be solved with whatever happens to be their favorite method of punishment.
I often write about my sons’ Down syndrome, or their medical needs, but today I am stepping out to say that my son lives with severe bipolar disorder. I say it so others know they aren’t alone. I say it because I cannot abide the stigma any longer.
The Mighty is asking the following: Tell us about the first time you reached out to someone about your mental illness. Whether it was a friend or a professional, we want to hear about why you opened up, how it went, and why you’re glad (or maybe not glad) you did it. Check out ourSubmit a Story page for more about our submission guidelines.
“We’ll all float on OK.” — “Float On” by Modest Mouse
One memorable night of my first admission in a psychiatric ward, I sat up with another patient, Joey* and gave him my CD to listen to. Joey had come back to the ward from day release, drunk and in a dark place, refusing to go to his room, ranting about ending his own life. The night nurses told me not to bother, but I sat with him in the corridor for a while. Joey had been living in the ward for three months. Homeless, he didn’t have anywhere else to go. It was his last night there before he was being driven to a half-way house. Earlier in the day, I’d helped him pack and discovered his “The Cure” t-shirt and pulled it on over my black hoodie. He’d reminisced to me about his life on the street and with prostitution. A couple of days earlier, he’d come back from the supermarket with a box of black hair dye, and I’d helped cut and dye his hair. Suddenly, I’d had other patients lining up for a hair wash at my makeshift salon.
The other patients are what I remember most about my admissions. Their stories, their colorful personalities, their kindness and warmth. I can’t remember all their names or faces, but we were comrades in the hospital, keeping each other company in the early hours of the morning when the mania does not allow you to sleep, or during the boredom of long afternoons after visiting hours were over. We’ve spent Christmas together, and I’ve shared with them some of my deepest fears.
Eight years have passed since that night in the ward with Joey. I still pray for him sometimes, and hope he found his way out of that dark place. In those early days of my first admission, we were asked in a group counseling session to write down the positives in our experience of being diagnosed with a mental health condition. There were groans at such a trite, patronizing exercise, but in my manic state I blitzed it and came up with a full list. After some revision, I use that list to this day. I continue to remind myself that in a funny way, having bipolar disorder has been one of the best experiences of my life.
Yeah, there are shit days. It’s hard. I’ve had times where I haven’t wanted to be alive, a lot of days it’s hard to convince myself to do anything worthwhile, I’ve suffered post-traumatic stress from the screwed up delusions my chemically imbalanced brain keeps spewing out. I feel resentment at the seemingly endless pile of medication I have to keep track of. I feel I have burdened my family with my illness, and I am racked with guilt.
In spite of this, or perhaps because of it all, my experiences and the sheer challenge of a journey through my own head, has enriched my life. As well as the people I have been fortunate enough to get to know on the wards, I have been forced to get to know myself. It has brought me closer to my family, forcing me to open up about my drug use early on. It’s pulled me and my husband closer as we cling together through the terror of it all. It forced me seek proper medical attention, and now I have a good medical team of mental health professionals who I trust have my back. It has taught me about health, relationships, myself, people, life.
So, to anyone who has been slapped in the face with a diagnosis, do not suffer from your mental health condition. Allow it to empower you, let it enrich your life. And on those bad days, get out your happy song and trust that we will all float on anyway.
*Name has been changed.
The Mighty is asking the following: What was one moment you received help in an unexpected or unorthodox way related to disability, disease or mental illness? Check out ourSubmit a Story page for more about our submission guidelines.
“Music has always been my protection against the world, from a very young age. I feel safe inside of a jam.” — Trey Anastasio, Guitarist and Vocalist for Phish
Like many people, I love Trey. Trey is a hero. I feel like Trey and I could be friends. However, I feel it for a different reason than many. You see, both of us hold something a little strange in common: we are in recovery. He, famously, is in recovery from addiction to painkillers and alcohol; I, much less famously, am in recovery from my mental illness, bipolar 2 disorder. And, like Trey, it is inside music, inside the “jam” that I feel the most safe.
This essay has no purpose other than my reflection on that recovery inside the very interesting world that is the “jam band” community. From what I can find, there have been no academic studies done on mental illness among jam band fans; as well, there isn’t really any supporting evidence for the jam band world being a boon to one’s recovery. So, I’m going to write about my experience and how the jam band community contributes to my recovery, or how I have found peace in and from the jam band world.
First, what does it mean to have bipolar 2 disorder? Bipolar disorder is a mental illness where the ill person experiences two distinct moods. The first is mania, a time that can contain things like high energy, racing thoughts, feelings of invincibility, sleeplessness, hypersexuality, extreme spending, etc. The second is a deep, dark depression that usually leads to suicidal thoughts or ideation. Bipolar 2 disorder is a form of bipolar that does not have moments of pure mania but experiences of hypomania (or, what I like to call,
“not-quite-mania”) and contains much more time stuck in the pits of depression. For the jam band community, Mikey Mirro, the original drummer of Umphrey’s McGee died of bipolar disorder.
Like I imagine it did with Mikey (and from accounts I’ve read, it seems quite likely), death haunts me. The depression I experience with my bipolar causes me to come untethered to life, to relationships. I distance myself from family, from my wife and kids, from my friends. But, since I’ve usually bought a ticket beforehand, I still make it to shows (you can’t waste that money, am I right?). And I still listen to the music. And the music, both live and recorded, have kept me sane more than once.
As someone with bipolar (and my condition “rapid cycles,” meaning I experience more than four major hypomanic or depressive episodes a year), my mind betrays me. In hypomania, I cannot keep my mind on anything for very long. I have ideas upon ideas and move to each with great earnestness. In depression, my mind stays stuck, like a scratched record. I simply ruminate on my pain, and this leads to thoughts of death, which leads to further thoughts of pain and the cycle goes on and on. In both of these instances, music, especially “jam” music, is a saving grace.
In hypomania, my mind races. I have thoughts upon thoughts, and I have to act on each one at that moment. But nothing gets done or happens because each thought is interrupted by another and another and another. In this cycle, I can’t stop. My mind never shuts down. It never focuses. But, I can still get lost in a jam. Recently, a favorite is Phish’s Tweezerfest (a show at Dallas’ Bomb Factory on May 7, 1994). For about the last year I have found myself immersed in the second set of this show. It starts off innocently enough. Then Tweezer erupts as the third song, and we’re off as Trey and the boys move and weave Tweezer around a number of different songs by artists like Aerosmith, the Breeders and Prince. In my racing mind, I can get lost in this. My thoughts do not have to fly by because the jam never gets stale and teases me. Phish never simply settles into a groove and plays, but they keep it moving forward. My manic mind needs that. They surprise by bringing in stuff that should not be there. It works, just like my hypomania. It seems random but makes sense. And it’s beautiful.
The physical community has also been a real benefit in these moments. The social media imprint of the community leads to avenues and places to discover and explore that are further and further out there. The ideas are endless. But the community also helps you stay focused on the task at hand, which is enjoying and living in the jam. When I’m hypomanic, I’m moving to the next thing all the time. The now is not enough. The community brings me back to the now. This has happened at shows multiple times, as I’m running from thing to thing and a head grabs me and just says, “Isn’t this unreal?” or “Can you believe they’re doing this?” And I have to stop, take a moment, listen and usually end up lost in the jam. The community, by sharing life, brings me back to the now.
The community is also there when I am the opposite of hypomanic. When my depression sets in, there is a lot that happens. My anxiety kicks in, and being around people is tough, if not painful. As the depression continues to set in deeper and deeper, my suicidal thoughts grip me and can paralyze me. But the community never lets me rest there. And I can give two such instances.
First, there was an Umphrey’s McGee “hometown” show in South Bend on October 23, 2011. I didn’t feel up to going and offered my friend the tickets. He said he wasn’t going without me because I was a huge UM fan. And this is true as I’ve followed the band since their beginning days in South Bend and Notre Dame. He basically just said I had to go. When we got to the venue, the doors were not open yet and so we got some food, chilled outside and embraced the scene, not a huge scene but a good scene. Positivity, joy, good vibes. People were talking about what they expected, what they hoped for. It was like the prodigal son returning and we were all wondering what (t)he(y) would look like. Umphrey’s didn’t disappoint and played two songs I love for the encore in “Hajimemashite” and “Front Porch.” Did it erase my depression? No. But it gave my mind somewhere to go, an out, for a few hours. It eased the pain.
Similarly, I was at the infamous Phish “rain” show in Chicago; no, not the one they cancelled, but the one on July 21, 2013, the Sunday night show (with the divisive “Second City Harpua”). I wasn’t super stoked to head up to the show because I was depressed. Even worse, I was by myself because, well, my friends just are not into this stuff. And, as the rain started, I could see the show getting cancelled. In fact, as “Run Like an Antelope” was cut short, I started to wander around, found no real place to go and decided to jet. I was walking through the attendance gates and couldn’t move because so many people found cover there. It was there I met some dude from Madison who talked me into staying because, hell, it was Phish and a Sunday show. And you never miss a Sunday show. And I stayed and it was good and weird and now I’ve been to one of “those” shows. But it was a community that helped one another (there was a lot of helping under that tent) and leaned on each other. We stand each other up… because we gotta dance and feel the joy.
It’s ultimately the music that brings me back and gives me life in the midst of terrible depression. Two shows right now are places I keep coming back to. The first is the Umphrey’s “Improv” show in Madison, Wisconsin, with Joshua Redman (January 28, 2016). In the second set the band simply steps up to their instruments, asks for a key, and begins playing. They don’t stop until the end of their set. And what Umphrey’s does so well is to take you on a journey, with highs and lows, fast and slow, mixing genres, etc. Listening brings me into a space where I don’t have to focus on my pain, my hurt, my incredibly dark thoughts. I can simply follow the band. And this is what I really appreciate about the last show, which is the famous, newly (officially) released Grateful DeadJuly 8, 1978 show at Red Rocks. The Dead do something different for me on a whole. They are always there, steady. They don’t let anyone drop out, even when someone takes risks. Jerry would come out and do something crazy and the band would be there and catch him. And it’s probably because I just got the show, but I feel safe here. In my depression, the band catches me and keeps me steady; their groove becomes my groove. Their musicianship is beautiful and space-y and takes me in and gives me the safe place that I need. It all works together to allow my mind a place to go when it hits its darkest moments.
In my opinion, many have a distorted idea of what makes a woman beautiful. She “must” have the body of a goddess, and…well actually, that’s about it. A woman should have a “perfect” body. If she does, then it often means she is sexy, successful and powerful.
But, what is a perfect body? I have struggled with both an eating disorder and bipolar disorder for many years. After I began to get a grip on the bipolar disorder, my weight exploded. What was happening? I threw myself even farther into my eating disorder, trying to combat the weight.
I had my last doctor’s appointment with my eating disorder doctor this past fall. My weight had finally stabilized from all the psychiatric medication changes. All my vitals were more than healthy. My cholesterol was great; my thyroid levels were awesome; my blood pressure and blood count checked out fine. All of my nutritional blood work came back saying I was eating enough and eating enough of the right foods.
I was healthy.
And yet, I weighed 240 pounds.
As I sat there and stared at the paperwork, my doctor pointed out numbers on charts with my configured blood work on them – percentages, ratios and abbreviations. I
listened. I understood. I can’t reiterate all of the terminology, but, what she told me was my psychiatric medications, while helping to keep my mind stable and not adversely affecting my overall health, make me what many people would consider “fat.”
It makes me sick to my stomach if I think of myself like that. It is hard to see all the jarring, red stretch marks from gaining what seems like an unbearable amount of weight. But slowly, I have come to the ability to cope with how much I weigh. It helps to have a strong family support system. It also helps to have an understanding primary care doctor, encouraging me to let it go – reminding me there is nothing I can do about losing weight in a healthy fashion, and my mental health is far more important.
Coming to the realization my mind is not something that can be cured completely has been surprisingly comforting – as I now better understand how to keep my life in balance. The medication is part of that balance.
And with finding the courage, among a world often propelled by a warped sense of physical beauty, to believe in my heart that I am gorgeous, despite my inability to lose weight, I feel myself being set free.
Psychiatric medication can take a real toll on your weight. But, just like the state of your mind doesn’t define you, your weight doesn’t define you either.
I know who I am. I struggle with bipolar disorder and I struggle with an eating disorder.
And despite all of this, I am not my illnesses.
I am so much more than that.
I am a fighter. My mind isn’t broken. My skin isn’t ugly. My body isn’t ruined.
I am a beautiful tiger who has earned her stripes.
I am beautiful.
The Mighty is asking its readers the following: What’s one secret about you or your loved one’s disability and/or disease that no one talks about? Check out ourSubmit a Story page for more about our submission guidelines.
I’ve worked really hard my entire life to be a person who is “presentable” to the world, so much so it has become second nature; I lost touch with who I really was. I became tangled up in my diagnoses, who I wanted to be and who I was by nature. What emerged from this combination was a confusing mess I struggled to navigate.
Part of the reason it took me so long to get diagnosed was because I was hiding my symptoms. Those I couldn’t hide I didn’t talk about or acknowledge, and no one else did, either.
Looking back, I know now my symptoms of bipolar disorder and attention-deficit/hyperactivity disorder (ADHD) both began at a young age. It was easy to interpret some of those symptoms as normal behavior because I did not talk about the more extreme experiences — how I struggled to stay afloat at school and my periodic bouts with psychosis. Part of me did not yet understand these things, and for some reason I suspected these issues should not be talked about. Somehow I sensed the stigma attached to mental illness even then, and found myself affected by it.
As an adult, I felt pressures to be a certain person, to be everything for everyone, to not cause trouble, to be successful. I hid the darkest parts of myself, the symptoms that plagued my existence, and everything began to spin out of control.
There are a number of reasons. Shame, for one. I was ashamed of not being perfect and of being sick. A big part of me did not even know I was sick; I thought I was defective, or a failure at navigating life. I was also embarrassed by my symptoms. They caused me to think, speak and act in ways I didn’t have control over, in ways that caused me to wreck my life on a regular basis. I wore that shame and embarrassment at all times, the weight of it crushing me each day.
The stigma associated with mental illness was a huge factor that kept me silent, even though I didn’t always realize it. I was afraid to admit to the world I had these symptoms. I struggled, so I created and tried to play the role I’d cast for myself. But there was no willing away, no shedding my illnesses that I’d been avoiding for my entire life.
One of the ways I hid my bipolar disorder was through social withdrawal. No one knew I was staying up nights at a time, writing maniacally, exercising or shopping online, and then sleeping for days on end, because I avoided the company of others. No one knew about the shopping sprees at the mall until after the fact, and it was seen as some personal flaw rather than a symptom of a disease. No one saw the mood shifts, because I hid who I was from the world and only allowed them to see what I wanted them to see. I kept a carefully controlled image. Whether some saw through it or not, I didn’t know. I didn’t want to know. I wanted to believe I could change myself, that I could make these symptoms disappear. This only made things worse.
I hid ADHD through anxiety and compulsions. I am, by nature, very disorganized. I counter this by being obsessive about it. I’d go on huge cleaning sprees, but inevitably, things always ended up a cluttered mess. This might not sound like a big deal, but it affected every area of my life. It affected my self-esteem: “I can’t do anything right. I can’t even stay organized.” It affected my relationships: I never allowed anyone to visit without scheduling with me first, allowing me time to clean and organize. No spontaneous drop-by’s allowed. The idea that someone could knock on my door and me not expect it caused me great anxiety. It affected my time: I spent countless hours focused on cleaning and organizing, to no avail. Things always ended up a mess again. It affected my money: I’d buy lots of tools to help with cleaning and organizing, only to fail to use them. This symptom of ADHD has been painful for me. But I didn’t talk about it. I went to great lengths to hide it, much like my bipolar disorder, to the point of total isolation.
I hid my inattention and troubles with focus by overcompensating. I would stay up all night studying, memorizing texts so that I could make good grades. I didn’t want to say I wasn’t processing lectures at school. I just wanted to be like everyone else.
I made my life much more complicated than it had to be by trying to hide who I was. I suffered under the burden of stigma for my entire life, which is why I am passionate about making it obsolete. We don’t need to stay silent; we don’t need to hide. We need to talk about mental illness.
I have finally reached a point in my life where I am no longer afraid to talk about my illnesses. Do I still feel embarrassment and shame? I’d be lying if I answered with a definitive “no.” The truth is, I do still feel some negative emotions with regard to sharing, but it gets easier. I’ll probably always have mixed feelings because I am a private person and sharing is hard, but I want to show others they aren’t alone, and I want the world to see that mental illness is real and it hurts every bit as much as “physical” illness (I believe mental illness is physical, too). I don’t want others to feel they have to hide like I did.
So this is me. I am disorganized. I have trouble concentrating. I sometimes concentrate on things too much. I have mood cycles. I am impulsive. I sometimes spend too much money or make poor decisions in the moment. I experience psychosis at times, when my mood is too high or too low. I struggle with anxiety and panic. I don’t hide my struggles anymore. I do my part to try to lessen them. I don’t fight against myself anymore. I believe these things can get better and my symptoms do not paint the entire portrait of who I am, but they are a part of me and I have come to accept that.
But I am not my struggles. I am more. I am a person. I am a person who struggles, yes, but I am a person who loves, who writes, who creates. I am a writer, an artist, a wife, a pet parent. I am learning to let go of fear, to not be ashamed of who I am. It is a process.
But I am on my way.
The Mighty is asking the following: For someone who doesn’t understand what it’s like to have your mental illness, describe what it’s like to be in your head for a day. Check out ourSubmit a Story page for more about our submission guidelines.
I’ve struggled with bipolar disorder for most of my life, and have a particularly hard time with the lows that come with it. Bipolar depression strips me of all joy, enjoyment and energy. I experience extreme sadness, excessive worry, significant loss of interest in things I once enjoyed and intense feelings of worthlessness. It’s hard to pull myself out of the deep, dark well that is my bipolar depression, and I’ve found it’s better to have a rope. My rope, my life jacket, my savior during a depressive episode is my cat. He helps me get through bipolar depression in five ways no human can.
1. He loves me unconditionally.
I’ve found people can love one another when it’s convenient. And when love or compassion isn’t convenient for someone, it may be when I need it the most. My cat loves me unrequitedly, makes no demands and expects nothing in return.
2. He provides positive, physical touch.
Petting my sweet boy’s warm, fluffy fur gives me a great feeling of comfort. Positive physical touch releases endorphins in the brain that immediately calms me down and comforts me. Nothing is better than my cat climbing onto my lap when I’m depressed, purring away my sadness.
During a depressive episode, I get completely out of routine and feel utterly out of control. I don’t go through the motions of the day like I should, and usually stay in bed because I feel like that’s all I can manage. My cat reminds me he needs to be regularly fed, groomed and played with. Taking care of him gives me a purpose and makes me feel needed, and that makes me feel important; like I matter.
4. He is a distraction.
Bipolar depression has a way of consuming my mind and preventing any positive thoughts or feelings from being had. My cat and his playful, loving personality distracts me from my negative thoughts and excessive worry. Watching him play always makes me laugh and forget the negativity that had just filled my mind.
Snuggling up with my cat always makes me feel better. I feel loved, wanted and cared for, even when depression makes me believe I don’t deserve any of those things. When I’m stuck in bed during an episode, my cat is right by my side, purring me through it. His comfort is infinite, and much needed when I’m down.
To others, he is just a pet. But to me, my cat is a form of therapy. He helps me through my bipolar depression in ways humans can’t, or won’t. He needs me, and I need him, and we have the type of relationship all the time that humans only offer some of the time. Bipolar depression is hard to get through, but I can get through it because my cat is always there. He will never judge me, always accept me and never leave me. He offers unrequited friendship and everlasting love, and that’s what gets me through my bipolar depression episodes.
The Mighty is asking the following: Create a list-style story of your choice in regards to disability, disease or mental illness. Check out ourSubmit a Story page for more about our submission guidelines.