I was told the other day in I am sure what was meant to be a compliment "But you seem so normal". Huh. I'm still trying to wrap my mind around that statement. I guess I am supposed to be glad that I mask my symptoms well enough that I do not make people in my social circles feel uncomfortable. Quite frankly, I have never been "normal", do not even know what that means, and hope that normalcy never becomes a part of my life.
The implication is that I can be accepted in circles of middle and upper class, able, educated folks because I appear to the naked eye to fit all of those molds. I am middle class, I am well educated, and I am physically able. However, when I reveal to you that I have a mental illness because I talk about it openly for just this reason, there is no need for you to give me your approval of how that makes you feel. I get to be that person you know who is "one of them", but not really. And I am starting to wonder how I feel about that.
I wonder if all of these wonderfully accepting people in my life would have been so accepting and supportive 5.5 years ago when I was at my absolute lowest point in my life. I know the answer to that, because I had a large circle at that time, and when I got sick, people got absent. Not everyone surely, but a TON of people. At a time in my life when I was struggling to survive, when I was in the hospital, when I was isolating myself to my basement so that people would not have to deal with me, I was largely alone. Some of those people have trickled back into my life here and there, but it has never been the same.
So saying something like "you seem so normal" sounds like conditional love to me. As in, as long as you continue to be the girl standing in front of me, we're good, otherwise we may have an issue. It really is fine, I understand the dynamic. I get that you are not sure what to do with the mental health anomaly of a person who is not visibly symptomatic all of the time. So many of the thoughts of the mentally ill come from movie and television portrayals. People in psychiatric hospitals with a distant over-medicated look in their eyes, people violently acting out, mumbling to ourselves, twitching and on and on.
Guess what? Making you feel comfortable is exhausting work.
People who are really close to me know that it can sometimes be exhausting to be around me. When I am hypomanic, my thoughts are on an endless loop, my speech is rushed, I do not sleep for days, I cry easily, I make impulsive decisions. And I hate all of it. I do not know how to adequately explain that I know when I am not well, when my symptoms are getting out of control, when I am in danger of heading back to the hospital. I do not know what the experience is for other folks with mental illness, but for me, I am always aware and always monitoring. There are some more serious mental illnesses when control is not as possible.
I am in a much better place mentally than I was when I was first diagnosed and hospitalized. But for five months or so, until I got the proper diagnosis and medications, I was not okay. And I am not pointing fingers. Even my closest friends and family said and did things that were hurtful and because I love them, I have forgiven. But that is why it is crucial to me that I speak about my experience. Because the more I can talk about it, be real about it, and call out the misunderstanding I face in light of it on a regular basis, perhaps I am chipping away at the stigma and discrimination that we all face as a result of a health issue that we cannot control.
It is common for people who first hear of my diagnosis to diminish it with things like "we all have ups and downs", "who doesn't get worried or stressed some of the time", or my favorite, "sometimes I wonder how much of mental illness is even real". Live in my brain for a week, and I assure you that it is very real.
I have had Generalized Anxiety Disorder for a much longer time, and that was even more "acceptable'. Who cannot relate to having some anxiety now and again. So when I spoke of having an anxiety disorder, it was at a time when everyone was in therapy for something and it was almost fashionable to be on anti-anxiety medication. When I tell people now that I have Bipolar Disorder, I get a much different reaction. And it kind of breaks my heart.
Here's what it has meant for me lately. My husband's health insurance changed this year, and my mental health coverage changed dramatically. I had finally after two years or so of trying every combination out there, tweaking and changing, I was on a medication regime that was largely unchanged for a long period of time. And it was the most stable I have been since being diagnosed. But this year, those medications were going to cost me out of pocket approximately $2000 a month. Impossible. So I went to my psychiatrist, who I also pay for out of pocket now because my insurance is so bad that no reputable doctor participates in the plan, and asked her to help me to find something that would work and would be less expensive. She is wonderful and understanding, and we have been working diligently on a new combination with older meds that are on the formulary that my insurance company deems acceptable. And I am still paying close to $400 a month to take those, and they are much less effective.
I had to stop taking Cymbalta, which we discovered this summer has apparently been treating symptoms of fibromyalgia that we did not know that I had. So on top of fighting with my brain, I am now fighting with my body. I am currently trying not to let self-pity and despair overcome me. I am trying to take other self-care measures to make sure that what the medication is not treating I can control on my own. But it is not going all that well. As a result, I am beginning to feel some of the discomfort from others that I am all too used to.
In my world, the most important priority in my life is my husband and my son. So I put every energy into making myself healthy enough to handle those responsibilities. But I am having to make some decisions on what to back off on. And that is hard for folks to understand. I am trying really hard not to go into isolation mode, because that is a really unhealthy choice for me as well. Staying busy is one of my best coping mechanisms.
I share this with you today, because I need you to understand that no matter how badly I am struggling right now, I still consider myself exceptionally lucky. And that is truly a sad commentary. I will remind us all again of the multitudes of people who have to choose between life saving medication and feeding their children or paying the rent/mortgage. I will remind us of the huge numbers of people who are losing their lives to suicide because they are not being treated adequately. I will remind us that no matter how we present to you, or how acceptable our behavior is or is not, we still need lots of support.
I sometimes wish that I had had someone take a photo of me during one of my hospitalizations when like everyone else on the unit, I was dressed in pajamas and a robe, slippers, and not allowed to use a pen or shower without supervision. Because when things are the worst for me, I am indistinguishable from so many others who are not quite as acceptable to society.
Mandala
Tuesday, September 9, 2014
Saturday, September 6, 2014
Littles are Going to Change the World...But We Have to Help Them
I just heard something delightful in my living room. My little was building a Lego creation to send to a friend who had just sent him a delightful surprise in the mail. His love language is primarily Lego at this point. And while he was building, he was explaining to me what he was doing. "I am making two ships because one of Amelia's mamas loves Legos too". He has a running commentary about a lot of things, and I am guilty of tuning some of it out at times. But given all that is going on in the world around me right now, I found this simple nonchalant declaration a sign of what can be.
Here is why. At the age of seven, little genuinely does not define people by lifestyle choice, skin color, economic standing, manner of dress, food preference, religion or whatever other thing that we, much less enlightened adults, tend to use to "other". I cannot begin to explain to you how much this amazes me. I am in wonder of him a lot of the time. I could take all of the credit I suppose, what a fine child I am raising and all of that. But it goes beyond that. He is by nature kind and tender, and while I nurture and guide that when I can, I certainly did not make him that way. It is his personality. I am amazed because my family has people in our lives who are diverse and colorful and outspoken and accepting. They love my son and he loves them back. And he does not question any of these differences at this point in his life, because thus far, he has not encountered anyone who has taught him otherwise.
We are your average "All-American" family. Mama, Daddy, too many pets, homeowners in a quiet neighborhood, middle class (whatever that means anymore), and white. But the spouse and I got married in our late 20's and had little in our early 30's and between the two of us brought to this family a number of awesome folks. So by the time little has been old enough to be aware of the folks around him, he has seen some diversity. Surely, never enough, but enough that seeing someone different from him does not feel all that different to him.
He considers all who cross his path to be his friend, no matter their age (which this mama monitors closely, because well, you know) and even age does not seem to be a barrier in his mind. So seeing other littles with same sex parents, or single parents or parents who look like his is cool. He still points someone out of the crowd based on the color of their shirt and not on the color of their skin. Our neighbors down the street, a gay white couple with two adopted Black sons is a non-issue for him, or he keeps a whole lot of questions and comments to himself. Our friend who identifies as gender fluid did confuse him a bit not too long ago, but not for any other reason than that little had never seen him with make-up on. So when he saw a photo on facebook and asked "who is that", he did show some surprise by my answer. However, not because he is of the opinion that "boys" cannot wear make-up, but because he could not believe it was the same person. So he shrugged, said "he looks different" and moved along with his day.
Little eats the world. As long as you have some understanding of the world of Star Wars, an appreciation for Legos, or a willingness to let him explain those things to you, than he accepts you as you present yourself. He tells me quickly when he likes or dislikes someone, but it is always based on whether or not he thinks they are mean. And he is usually spot on.
So today when he made an offhand comment about one of the mamas liking Legos, I almost cried because there lives no hate in him at this point, and he is not unique. Lots of kiddos in lots of communities are being raised in similar situations, surrounded by diversity. He does not attend school, we do that at home, so I am not sure if that has something to do with it. I know that it does not take long for ugliness about differences to rear up in the school setting, but I know that we are raising a generation of children who do have the potential within them to change the way that this country works.
We have to cash in on this potential as the loving adults in their lives. Because I know that the heartbreaking day will come when he will be stripped of the innocence that he currently has toward people. He will meet evil, and hatred, and I know that time is coming sooner than I'd like. So I am gently beginning the process in school this year of talking to him about the injustices that exist. It is a hard balance to strike. Because I want him to live in a bubble where everyone is equal, and everyone is accepted, and no one gets hurt. But that is not fair to him, or to the world I want for him and his peers to change.
Caring adults NOW need to start having hard conversations about the roots of injustice, and acknowledging that injustice exists. I feel that I grew up in a world post civil rights movement, when the leaders and adults were tired of fighting, felt that things were good, and taught me just not to judge people and that would make everything okay. I am learning painfully that those types of assumptions might have been the easiest way, but not the best way. So as a forty year old lady, I am questioning everything, and trying to engage others in those discussions. And there is a LOT of resistance to that. But I will not raise my son in a world that tells him that ignoring differences, and the systems that enforce cruelty and injustice is okay. I am committed to finding a way to teach him the important and ugly parts of our history, to teach him that even though he personally does not hate other people it does not mean that hate does not happen and I really hope to teach him to listen compassionately and to think critically. I always describe myself as a collector of other people's stories, and I hope to pass them on to him. So that he can move into his adulthood with eyes open, so that he will question "authority", and so that he will use whatever power and privilege he has to continue to crush oppression and the systems that support it.
Here is why. At the age of seven, little genuinely does not define people by lifestyle choice, skin color, economic standing, manner of dress, food preference, religion or whatever other thing that we, much less enlightened adults, tend to use to "other". I cannot begin to explain to you how much this amazes me. I am in wonder of him a lot of the time. I could take all of the credit I suppose, what a fine child I am raising and all of that. But it goes beyond that. He is by nature kind and tender, and while I nurture and guide that when I can, I certainly did not make him that way. It is his personality. I am amazed because my family has people in our lives who are diverse and colorful and outspoken and accepting. They love my son and he loves them back. And he does not question any of these differences at this point in his life, because thus far, he has not encountered anyone who has taught him otherwise.
We are your average "All-American" family. Mama, Daddy, too many pets, homeowners in a quiet neighborhood, middle class (whatever that means anymore), and white. But the spouse and I got married in our late 20's and had little in our early 30's and between the two of us brought to this family a number of awesome folks. So by the time little has been old enough to be aware of the folks around him, he has seen some diversity. Surely, never enough, but enough that seeing someone different from him does not feel all that different to him.
He considers all who cross his path to be his friend, no matter their age (which this mama monitors closely, because well, you know) and even age does not seem to be a barrier in his mind. So seeing other littles with same sex parents, or single parents or parents who look like his is cool. He still points someone out of the crowd based on the color of their shirt and not on the color of their skin. Our neighbors down the street, a gay white couple with two adopted Black sons is a non-issue for him, or he keeps a whole lot of questions and comments to himself. Our friend who identifies as gender fluid did confuse him a bit not too long ago, but not for any other reason than that little had never seen him with make-up on. So when he saw a photo on facebook and asked "who is that", he did show some surprise by my answer. However, not because he is of the opinion that "boys" cannot wear make-up, but because he could not believe it was the same person. So he shrugged, said "he looks different" and moved along with his day.
Little eats the world. As long as you have some understanding of the world of Star Wars, an appreciation for Legos, or a willingness to let him explain those things to you, than he accepts you as you present yourself. He tells me quickly when he likes or dislikes someone, but it is always based on whether or not he thinks they are mean. And he is usually spot on.
So today when he made an offhand comment about one of the mamas liking Legos, I almost cried because there lives no hate in him at this point, and he is not unique. Lots of kiddos in lots of communities are being raised in similar situations, surrounded by diversity. He does not attend school, we do that at home, so I am not sure if that has something to do with it. I know that it does not take long for ugliness about differences to rear up in the school setting, but I know that we are raising a generation of children who do have the potential within them to change the way that this country works.
We have to cash in on this potential as the loving adults in their lives. Because I know that the heartbreaking day will come when he will be stripped of the innocence that he currently has toward people. He will meet evil, and hatred, and I know that time is coming sooner than I'd like. So I am gently beginning the process in school this year of talking to him about the injustices that exist. It is a hard balance to strike. Because I want him to live in a bubble where everyone is equal, and everyone is accepted, and no one gets hurt. But that is not fair to him, or to the world I want for him and his peers to change.
Caring adults NOW need to start having hard conversations about the roots of injustice, and acknowledging that injustice exists. I feel that I grew up in a world post civil rights movement, when the leaders and adults were tired of fighting, felt that things were good, and taught me just not to judge people and that would make everything okay. I am learning painfully that those types of assumptions might have been the easiest way, but not the best way. So as a forty year old lady, I am questioning everything, and trying to engage others in those discussions. And there is a LOT of resistance to that. But I will not raise my son in a world that tells him that ignoring differences, and the systems that enforce cruelty and injustice is okay. I am committed to finding a way to teach him the important and ugly parts of our history, to teach him that even though he personally does not hate other people it does not mean that hate does not happen and I really hope to teach him to listen compassionately and to think critically. I always describe myself as a collector of other people's stories, and I hope to pass them on to him. So that he can move into his adulthood with eyes open, so that he will question "authority", and so that he will use whatever power and privilege he has to continue to crush oppression and the systems that support it.
Monday, September 1, 2014
My Apologies
I need to offer an apology of sorts. This has been an emotional time for me, and I have reacted before thinking in a lot of instances. In doing so, I have possibly alienated a number of folks without the intention of doing so. Lack of intention does not mean that I am not accountable for that. My anger and frustration have overshadowed my ability to think rationally. Sometimes this is a good tool and sometimes it is not.
So I am sorry to all of you who I have been short with, or frustrated with. I am sorry for not understanding that we all come to realizations in our own time. My timeline is not your timeline. In the past couple of days I have tried to take a step back and find center again. I am not totally there. I am still super pissed, but much of my anger stems from the powerlessness I feel in changing ingrained ideas in myself and in most of the folks I know.
So I am trying to slow down. I am going to try to be more patient, and to find a voice that is better able to be heard by more folks. I have done a lot of listening of my own during this time, and it has gotten through to me that there is little that I am thinking or saying that has not already been thought or said. The problem is that these voices I am listening to are not being heard by the people who need to hear them.
There have been discussions among some of my closer friends that sometimes to get your message heard, you have to find five or more ways of saying it. I try to keep that in mind. I have thought that I could impart some sort of divine wisdom on people in just one way, and that they should wake up and say, Yes Cathy I totally see what you are saying.
Systematized oppression has been hundreds of years in the making. It affects people in marginalized groups in a very real way, an excruciatingly painful way, and they are tired of trying to explain to the rest of us what that feels like. They are in many instances preaching to the choir. And the people who need to hear the message are not being exposed to it.
So here is what I have come up with. My voice does not need to be heard. I have had plenty of opportunities to talk, and I cannot tell the story any better than those who are living it. So in the next few days when I am posting about race issues, for the most part I am going to try to let others do the talking, and I may try to present it in a way that my people can understand. Because what I think our biggest problem is is that we just do not know how to listen to each other without feeling the need to be right.
Now, if you accept this apology, I ask you to keep an eye on what you will see here because I have done a lot of work, research and reading to try to get some important voices out there. These are not famous voices in most cases, but their messages are to my mind vitally important and if we ignore them, we are doing ourselves a disservice.
So I am sorry to all of you who I have been short with, or frustrated with. I am sorry for not understanding that we all come to realizations in our own time. My timeline is not your timeline. In the past couple of days I have tried to take a step back and find center again. I am not totally there. I am still super pissed, but much of my anger stems from the powerlessness I feel in changing ingrained ideas in myself and in most of the folks I know.
So I am trying to slow down. I am going to try to be more patient, and to find a voice that is better able to be heard by more folks. I have done a lot of listening of my own during this time, and it has gotten through to me that there is little that I am thinking or saying that has not already been thought or said. The problem is that these voices I am listening to are not being heard by the people who need to hear them.
There have been discussions among some of my closer friends that sometimes to get your message heard, you have to find five or more ways of saying it. I try to keep that in mind. I have thought that I could impart some sort of divine wisdom on people in just one way, and that they should wake up and say, Yes Cathy I totally see what you are saying.
Systematized oppression has been hundreds of years in the making. It affects people in marginalized groups in a very real way, an excruciatingly painful way, and they are tired of trying to explain to the rest of us what that feels like. They are in many instances preaching to the choir. And the people who need to hear the message are not being exposed to it.
So here is what I have come up with. My voice does not need to be heard. I have had plenty of opportunities to talk, and I cannot tell the story any better than those who are living it. So in the next few days when I am posting about race issues, for the most part I am going to try to let others do the talking, and I may try to present it in a way that my people can understand. Because what I think our biggest problem is is that we just do not know how to listen to each other without feeling the need to be right.
Now, if you accept this apology, I ask you to keep an eye on what you will see here because I have done a lot of work, research and reading to try to get some important voices out there. These are not famous voices in most cases, but their messages are to my mind vitally important and if we ignore them, we are doing ourselves a disservice.
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