I am NOT happy by nature. Happiness is a choice I make.
I did not get here alone. You can’t get here alone.
Thursday I was talking to one of my coworkers about my blog and we started talking about how terrifying it was for me to share it on facebook (you guys, for real. I was freaking out for like two weeks trying to decide whether or not to post it.) which led to us talking about how powerful it is when you realize you aren’t alone in dealing with mental illness.
This got me thinking about ALL of the people who have helped me get to where I am.
Now this list could be a million miles long. For real. SO MANY PEOPLE. I’m surrounded by people who kick ass. By people who are patient, loving, kind, generous, and generally the best.
This illness has a propensity to turn me into an asshole. I know that I am not actually an asshole, but when I am in the depths of depression or mania, or especially mixed mania, I am not myself. And the person I am when ill is kind of an ass.
I stand amazed at the fact that my asshole self was loved so powerfully by so many. There are SO many people who stood by my side when it was not easy to do so. There are so many people who were patient when I was a mess and loved me though the dark years.
These people went through their own hell while I was going through mine.
The position of support is one that is new to me. It is really really damn hard to support someone who is in the depths of mental illness.
And so this is my love letter to those who stood by me and loved me through the shit. I’m gonna call some of you out by name. Because you deserve recognition.
Top o’ the list honors goes to. . . (drumroll please)
Holy hell you guys, my parents.
The crap they have put up with from me. There literally are no words.
My parents have been a solid foundation for me when everything crumbled underfoot. They drove me to the ER in the middle of the night multiple times when I was self harming or felt suicidal. They held me as I cried after quitting a job. They came to my apartment when I wouldn’t answer the phone because I was asleep and obstinate, and I (now, totally didn’t then) know they were wondering whether they would find me alive or dead.
They loved me.
They still love me.
They will always love me.
I could not ask for better parents.
Next on the list!
Are you ready?
Is the anticipation building?
Next on this list is my very super awesome good best friend Amy.
This kid you guys. This kid and I have been friends for 11 years now. Over a third of my life we have been friends. We met in the midst of the bad times. We met when I was taking risperdal and gained 60 lbs in 6 months. We met when everything was blurry in my life and nothing seemed real. She saw past the illness and saw me. And she was able to keep the real me in her eyes, even when I was not being me. She helped me get help when I didn’t know how to help myself. She listened to me. I live comfortably knowing that if I am ever in crisis, I have a steady, calm, strong force in my life who will stand by my side and support me as I get the help I need.
Last but so very far from least is. . .
My beautiful, amazing, kind, caring, strong wife.
She’s basically the best wife ever.
I was manic when we met. She almost broke it off with me because of that. Thankfully I started to come down when she entered my life.
She gave me reason to live when I had trouble finding it within myself. She pushed me to finish my bachelors degree. She believes in me when I don’t believe in myself. She holds me when things hurt. She loves me. ALL of me. Even the dark, scary fucked up bits.
She loves me even when she is at a loss as to how to help me. She trusts me when I say I’m struggling but I’m taking care of myself. She reminds me that more therapy appointments are ALWAYS in the budget if I need them.
She is my steadying force. The one who talks me off the edge when my brain starts going down dangerous rabbit trails.
She loves me for exactly who I am, even when who I am is a little messed up.
This post is for you, people who have loved ones with mental illness.
You are heroes. You are courageous. You are powerful.
I only have the vaguest notion of how hard it is, but know that hopefully, someday, the person you are loving will look back with tears in their eyes when they think of the magnitude of your love for them, and how you stood by them in their darkest hour.
You love us when we are unloveable.
Lately I’ve been thinking a lot about what I would tell myself in the past. What message I want to get out through my writing, what I hope someone may hear and that will resonate with them. But the fact of the matter is, unless someone is ready and willing to truly hear and act on what is being said, the words don’t matter. What anyone has to say will only resonate when that person is ready to hear it.
The things I think of now that I wish I had known then is exactly what my therapist, my friends, my family, my doctor were all saying to me. Eat better. Try and exercise. Set one small goal every day and achieve it. Take baby steps to propel yourself forward.
But everything they said went in one ear and out the other because I wasn’t ready to learn how to manage the illness. There was a part of me that LIKED being sick. That used that as an excuse to do nothing, to give up on myself.
So to those who know someone who is in the depths of their illness, keep saying what you’re saying, but know they won’t act on it until they’re ready.
There is one thing that I heard at the right time and it changed the course of my life.
Are you ready?
Here it goes:
Thoughts of suicide and thoughts of self harm are simply symptoms of an illness.
Nothing more than vomiting being a sign of the flu.
Unpleasant? Most definitely.
Terrifying? Hell yes.
But having thoughts and wanting to act on them are two VERY different things.
This is one of the most empowering things I have ever heard. To know that just because I’m thinking about something, doesn’t mean I actually WANT to do it, it just means my brain is sick and not coping well.
I still think about suicide. I still think about self harm. I don’t let those thoughts control me. I get all mindful and shit and hold on to them, and let them go. Sometimes I can just talk myself out of it, and say “ok brain, you’re struggling right now but that’s ok.” Usually I physically shake my head to remove them from my brain. I look a little weird, but somehow the movement helps to lessen the thoughts. I also repeat “you are ok. You are ok. You are ok” until the thoughts pass. Or I journal. Or I skip rocks. The important thing is that I remember these thoughts are simply byproducts of this illness I have to manage.
We are in charge of our thoughts. We have control over our emotions.
We are more powerful than we can possibly imagine.
I turn 31 on Wednesday. Most people think of 30 as being a “big birthday” one with giant parties and apparently cake smashes like 1 year olds do are a thing now. I don’t understand, but ok. Celebrate as you will.
30 was nothing for me.
31 is everything.
For the bulk of my life I truly didn’t believe I would live past 30. I saw my life ending before that. I saw myself succumbing to this illness and it taking my life before I could reach the age of 31. That was the future I saw.
And here I sit on the cusp of 31. Living past 30.
And not just living, honest to god THRIVING past 30.
It has only been in the past year I’ve begun to thrive. I have found myself. I have found what drives me (instead of going through the motions because I couldn’t let down those who love me). I have goals. Like, real goals. One’s that aren’t “brush my teeth more often than not” or “maybe remember to shower occasionally.”
Which, by the way, are SUPER awesome goals and we should all have those as goals.
I am no longer living in survival mode.
As Hamilton would say, “for the first time I’m thinkin past tomorrow” (because Hamilton is currently everything to me. Seriously. Read all of my blog posts. Everything is Hamilton and nothing hurts.)
I have a tomorrow. I have a future. I see myself getting old. I see myself not just staying alive, but taking hold of life and OWNING it.
I wish I had something super inspirational to say here. Some easy quick fix as to how to get to where I am. Because where I am is amazing and everyone should experience this.
But I don’t.
There is no easy fix.
There is no 3 step program.
There is only work. And I have worked. And I do work.
The work I do to live with my disability is invisible, but it is there. Every day I stand up to the lies my brain likes to tell. I shut down the negativity and focus on the good in the world.
Because there is so much good in this world.
There is so much beauty even in the midst of the pain.
Back when things were not so shiny for me, I loved driving through the country in the dead of winter and seeing wheat fields.
See, as a farm kid, I can tell you that winter wheat is one of the most beautiful things you will ever see. Bright vibrant green in the middle of brown nothingness.
There are always wheat fields in winter.
You just have to find them.
This song is stuck on repeat in my head. Just that line. Over and over. A constant non-stop ever since I woke up this morning dreading our 10:30 appointment at the vet. My (our) beautiful, wonderful, diabetic seizure dog is no longer with us. I hate all of the euphemisms for death, but I feel like I can’t say it like it is, even when I want to.
My dog is dead. He was already slowly dying and we allowed him to go before he began to suffer tremendously.
And so I sit here grieving. Grieving the loss of my cuddle bug. Grieving the loss of my sister. Grieving even though I don’t know how. Feeling guilty for focusing on the positives. Trying to force myself to sit in the pain instead of wandering off to facebook, to instagram, to twitter, to anywhere but where my feelings are.
Running from feelings is what I do. It’s what a lot of us do. Perhaps especially those of us with brains that like to take those feelings and magnify them tenfold. Maybe if I pretend this doesn’t hurt it won’t hurt. Maybe if I don’t think about it these feelings will disappear. Maybe if I pretend hard enough my sister really WILL be away at camp, or my dog really WILL just be at the vet for a glucose curve.
It’s not healthy. And I know it.
And so I am forcing myself to grieve. Even though I don’t know how.
The Kubler-Ross model says that there are 5 steps to grief: denial, anger, bargaining, depression and acceptance.
Maybe. I don’t know about them being stages or steps or any sort of linear or non-linear path. I think they are all feelings one has surrounding death. Although guilt is missing. Guilt is definitely a part of my grieving process.
I think grieving is just a giant puddle of feelings that you jump into and wallow around in. With all of these feelings and experiences happening at once and at separate times and no matter what surrounding you and defining your every moment. I will never stop grieving the death of my sister. I will grieve differently for my dog. My dog was old. My dog was sick. My dog went peacefully in my lap.
My sister was robbed from this world in the prime of her life by cancer.
It is different.
She is ever present and yet she is always distant. Her life and death inform everything about who I am.
I choose to believe she would be proud of what I am doing with my grief. Even if some of it is being a workaholic. Even if I spend too much time at the coffee shop and not enough at home.
She would be proud that I haven’t had to go back to the hospital. That I put myself back on medication when I needed to. That I have stayed in therapy. That I have not self destructed, even this winter when I could feel the delusions creeping back into my brain. She would be proud that I am doing this work, whatever this work turns out to be.
Perhaps grief never ends. Perhaps that is the way it should be.
I finished my undergraduate degree for my grandma years after she died.
I blog and raise awareness about mental health and LGBT issues for my sister.
I live for my sister.
I love for my sister.
I ache for my sister.
She was taken from us far too soon. And sometimes I feel that maybe it should have been me. That maybe had I succumbed to the depression and ended it I could have been the sacrifice the universe demanded.
Which I know is pure bullshit.
A line from one of my favorite musicals, Next to Normal (about mental illness! And grief! Listen to it! Watch it!) goes, “he’s not here. . . he’s not here. I’m still here.” I can’t find the exact lyric where it happens, and there’s a chance it doesn’t and I made it up, and if that is the case, I don’t really care.
What matter is that I am still fucking here.
I’m alive, I’m alive I am so alive and I am going to live every moment. I am going to embrace every moment.
When (not if) you find yourself in the depths of grief someday, cling to the fact that you are still alive. That every breath we take is a miracle. Don’t take relationships for granted. Don’t take opportunities for granted.
It’s so easy to let life simply happen to you. I did for years, surrounded by the darkness and pain of depression.
Fight that shit.
Find the positive.
Don’t let this illness, or whatever struggles you have in life control you.
You are more than a diagnosis. You are more than your pain.
You are a beautiful rainbow unicorn.
For more on my sister and grief, check out: There is more to life than death and taxes
What brought me to this saying is a mystery, lost to the years of depression and mania. Lost to the medications. Lost to my desire to hide from my illness once I reached "recovery." I was going to college when this saying entered my life. By going to college, I mean living in a dorm room and occasionally finding the courage to show my face in class. The depression was overwhelming and I was lost in it. Fighting the feeling that someone was following me, being crushed by the weight of it all.
Maybe someone said it before me, but I choose to claim it's creation. I know it's origin in my life comes from the Bible. From 2 Corinthians 12:10: "That is why, for Christ's sake, I delight in weaknesses, in insults, in hardships, in persecutions, in difficulties. For when I am weak, then I am strong."
It feels weird to quote the Bible in my blog. However at that point in my life my faith was my driving force. My faith is what kept me alive and what brought me to this saying. This saying that I repeated to myself for years and years and then lost when things started to get better. This saying that I reminded myself of when I wanted to hide my struggles, when I wanted to be invisible. When I was fighting to keep a grasp on reality. When I was fighting the depression.
When I was struggling to stay alive.
Flash Forward to last winter, eleven years after I was "going" to college, eight years after my last hospitalization, who knows how many years after I had needed to rely on that saying like a life raft. A small piece of hope in the midst of despair. I randomly listened to the insanely amazing TED Talk by superstar researcher storyteller Brene Brown. I cried. I didn't ugly cry because I have too much pride/fear/something to let myself actually break down very often. But I cried. And then immediately e-mailed my wife and my therapist. I had stumbled upon someone who spoke to the very core of me.
I was ashamed.
I still am. I fight it, and now I have words and a way to look at it that helps me rail against the shame monster. I am terrified people will know about my past. Will hear my diagnosis. Will have issues with my gender presentation. Will know that I am queer.
I am terrified that people will see me and run the other way.
Honestly, I can make a list of those who have. There are family members and formerly close friends included. But that is a very short list when you get down to it. The list of those who have loved me and held me through the dark years and who love me and are excited for me is massive.
Vulnerability combats shame
To fight against shame, one must stand in front of it, and let down their guard. To be seen one must allow themselves to be open enough that someone else CAN see them.
And so I come full circle.
I'm no longer fighting to stay alive. I'm finally starting to come out of survival mode. Every day is no longer a struggle. This is really weird and hard for me.
I value Strength.
I lift weights so my body will be strong. I work hard because I want to be seen as a strong employee. Strength is important to me.
To be strong we must first be weak.
We must allow ourselves to be seen. We must be honest about our struggles and acknowledge that we might be turned away. Or dismissed. Or laughed at. We have to put ourselves out there and know that things might burn up in flames. But maybe that bonfire will be the best thing that happened to us.
I am terrified.
Like, sweaty palms, heart racing, what the HELL am I doing terrified. What do I think I'm doing? Who am I to try and do something with my life. I'm just a punk ass queer from the middle of nowhere Missouri.
But maybe being who we are is the strongest most powerful thing we can do.
Maybe we need to chase authenticity.
Maybe we need to be weak, especially because we want to be strong.
Are you willing to try and find strength through vulnerability?
The voice came back last night. This sounds much more ominous than it is. There is a voice in my head, and I think most people have it in some form. For me it is Brad Pitt's rendition of Tyler Durden from Fight Club. "Listen up, maggots. You are not special. You are not a beautiful or unique snowflake. You're the same decaying organic matter as everything else."
This voice haunts me. It is not an audible voice. It is nothing more than that fraud voice. That part of my brain which doesn't want to see me succeed. That part of my brain that is terrified I might be able to do more than I ever thought I could.
I'm still learning what to do with this voice. What to do with the angry diatribe it shouts at me as I'm trying to fall asleep. I fear it will move into a full on delusion. That it will go from being someone else's voice in my head to being someone else's voice in my ear. That I will start believing the hateful vitriol it spews. That I will go back to where I was. That this is all a masquerade and I'm really back 10 years ago, living in the bedroom I grew up in. Jobless, unable to get out of bed, helping my dad on the farm because he wouldn't let me do nothing. Seeing the tears well up on the mornings I couldn't manage to get out of bed to help him.
I am not healed. I have come a long damn way and I am proud of the work I have put into getting where I am. I have learned how to successfully manage this illness. But it is management, and there is always that employee that doesn't like to listen.
I was going to write about how I got second in my coffee shops barista championship and how I believe in giving your all every day even if your all is simply getting out of bed. But after the voice made its appearance last night, my heart wasn't in that post anymore. My heart is here.
Do I need to talk to my psychiatrist about upping my meds? Is it ok to wait a little while and see if it was just because I had a hard conversation? Am I going down? Am I going up? Are both happening at the same time? Am I going to crash and burn into a brilliant fiery pyre?
Maybe I'm ok, and I'm just human. Maybe this is humanity and self-doubt and not bipolar.
I have to believe that I am ok. That I am OK. That I am fucking OK. So leave me alone because you are full of lies. You are not the truth.
On Friday I went to a local botanical garden and found myself surrounded by my sister. She was there, in the breeze, in the plants, in the history of the place. For a minute she was alive again, and we were on spring break taking pictures with our stuffed animals under the branches in the breeze.
I cried in the car the entire drive home.
Sunday my parents, my wife and I went to the cemetery and laid flowers on her grave.
My baby sister was 25 when she died. One month and one day away from being 26. Ovarian cancer slowly destroyed her abdomen and stole her from us 50 years too early. This September will mark two years since she died. Two years since my life was changed forever.
Grieving is hard business.
From the moment she went into hospice care, up until about 6 months ago, the song on repeat in my head were a few lines from the song "What you Own" from one of her favorite musicals, RENT.
Don't breathe too deep, don't think all day Dive into work, drive the other way That drip of hurts, that pint of shame Goes away, just play the game
And that is what I did. I worked. And worked. And worked. And am still working. I worked through the pain and ran from the pain through working. I worked instead of feeling. I still work instead of feeling. I still turn off my emotions the moment a tear begins to trickle down my cheek.
This is not healthy and I know it.
I am learning how to grieve. I am learning how to take the anger and fear and sadness I have and use them to live a life as full as I can. It is the only thing I can do.
When she was diagnosed with ovarian cancer, she began to do the work. To raise awareness of this horrible form of cancer and she fought to find the bright spots in the midst of the unthinkable.
She wrote an article on xojane, she did television interviews, she blogged and she fought like fucking hell. She took charge of every moment of her life and lived it to the fullest. She LIVED her life and used what energy she had after chemo to try and make the world a better place for others.
In the end her cancer was resistant to every type of chemo and clinical trial the doctors could throw at it. Science just isn't advanced enough yet to save my sister.
Her death taught me that we each only have one shot. We could die tomorrow. As my buddy Alexander Hamilton would say, "I am not throwin' away my shot." I listen to that song on repeat and miss the hell out of my sister, knowing that she would be immensely proud of the work I am doing.
What will you do with your shot?