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darkness bleedsI recognize that this disease that I suffer affects everyone around me. I recognize it internally, externally, intellectually and even with every piece of my heart. You can’t have a comprehensive and insidious disease and not expect it to affect those around you. When I suffer it is very possible that those around me suffer.

But although I have this knowledge, it still brings out the most basic and gruesome of emotions, anger. I get angry at those who presume to be affected with my disease. I get angry at those who believe that they have any reason to feel anything because I am suffering.

It makes it seem that I am doing this intentionally. That I am purposely making those I love feel bad. That I am purposely trying to ruin the lives of those around me for my own gain. That this disease, while affecting those people, is controlled by me and determined by me.

I don’t know how many times I am going to have to explain to people a disease that they don’t have. I have no way to help a person see the intricate details and the callous emotions that this disease produces without my consent. I have no way of explaining that this disease while affecting someone else has no real comparison to what it is doing to me.

That could be the problem. Those without this disease, even those who live with people with a mental illness, can’t possibly understand this disease. Actors who jump on couches, therapists who spend everyday listening to the stories, and husbands who love their wives can’t know what this disease is. You can’t see it, feel it, believe it. They are incapable of understanding.

So despite how strong those of us with a mental disease attempt to be, we are broken by the lack of true understanding of those around us. We expect them to recognize that our brains are working so hard to stay alive that there is no room for breathing someone else’s desires. We expect them to hear us, listen to us, and know in our silence that there is a profound difference between who and what they are and what we are each and every day. We expect that those we love, while not understanding, could at least also understand that they have none either.

I wrote a book about mental illness from the this idea. I wrote it to mothers with children who have been diagnosed with the disease. The book at its base suggests ways a loved one can support and help those with these diseases. At the beginning of the book I acknowledge that despite the fact there are twenty-five chapters there is no general consensus on how this all works. The mother’s child reading this book is different than who and what I am. That is the nature of this disease.

One of the reasons I wrote this book is because of the sheer exhaustion of going to any bookstore and seeing help books written by doctors and others who have never had the disease. Self-proclaimed professionals who have learned everything they know from a text written when they were in college. Self-proclaimed experts who believe by listening to stories they can know what mental anguish looks like.

We know how to contemplate death like those with the horrible sentence of it. We each know physical pain, nausea, and the massive desperation to live. Though we may not have cancer there is still a point that can be shared by our own physical limitations. Although we may never feel chemotherapy running through our veins we can feel the side effects from our own experiences. With many diseases we can feel or at least empathize with someone who is sick. (I would argue this doesn’t work with all diseases)

But you can not and never will be able to understand mental illness unless you have it. I can sit here and explain in poetry all about voices and the darkness that lives waiting for my weakness, but unless you know what darkness or voices contain you can not know. You can not guess and you can not assume. You can not tell.

This must be an amazingly frustrating aspect of mental illness. Those we love and who wish to help us, in their own way, can’t because not only do they have no idea what they are talking about but they have no new ideas to make it better. It must be horrible to realize that not only do you not know about mental illness but that there are parts of your love ones that you will never know. And it must be horrifying to realize that there are things in your love ones that are more important than you are.

In my brain the suppression of the voices and the desires to listen to those who would tell me to stop living are often more important than the ones that I love. The ability to focus on two or more points at the same time takes more energy than running those miles I hate. The need to be perfect for those who need me to be at the neglect of those who do not need me to be perfect is guilt-ridden.

I can’t solve the world’s problems. I can’t change my brain. I can’t make what I am going through on a day to day basis go away. This journey I am on is as hard as it gets. And while I need desperately to get off the ride the consequences for those I love is much worse than the knowledge that I can’t love them right now. I can’t open my eyes to the loneliness that my loved ones feel because then the fall will be so great as to be called a tragedy.

I recognize the selfishness. I recognize how unfair this must be. I can even imagine how I would feel if the roles were reversed. But what I can’t do is stop my own fight long enough to reassure those who profess to understand. I can’t handle the guilt of someone’s own feelings in lieu of my own struggle. And that sucks and that is hard. But it is the truth.

My job in this world is the same as most everyone’s. I have to survive and I have to make sure my children do the same – at least for the first twenty years. My job means taking my medications on time, going to my doctors when required, and acknowledging, if only to myself, when the flight is higher than the cast of the landing lights. My job is to make sure that I find ways to cope, to move forward, to get up off that ground over and over again.

Beyond the awesome details of these mental diseases, I don’t believe others can understand what it feels like to fall over and over again. I don’t believe another person can understand what it feels like to want to rest in the darkness. I don’t believe a person without this disease can possibly understand that while most fights get easier over time, for us this fight just gets harder and harder.

The voices get more perfect, the anger greater, and soul deep sense of loss much harder to come back from. It seems every time I fight I get just a little weaker. The life that I was once promised didn’t come true. The future that once seemed so bright is no longer there. And all I can pray is that the belief in my own worthiness will find a way to survive. Not intact, but not so shattered as to fall through the cracks in my soul.

Mental illness isn’t easy. It isn’t easy for anyone. It is why people hate us, why people find ways to discredit us, and why people fear us. The acknowledgment that not only do they know nothing of this disease and never will, but the acknowledgement of the inherit selfishness in this disease is hard to stomach. It is hard to believe for either the sufferer or the loved one to feel this truth when they are walking down the aisle. And it is hard to acknowledge this truth when the world keeps throwing out enemies that look amazingly like the ones we see in the mirror every day.

Today, I will do the courtesy of not making any decisions about my future. Not because I can’t, but because I shouldn’t. Today, I will continue to breathe and try not to remember the beauty of that knife, that drink, that drug. Today, I will continue to be angry for in my anger, I just might survive.