Showing posts with label relationship. Show all posts
Showing posts with label relationship. Show all posts

Friday, November 7, 2014

Lessons From My Parents: What Does Farting Have to Do With Love and Commitment?

This, by far, is one of the weirdest posts I have ever written. 
Or, at least the weirdest title, but you have to have a catchy 
Rev. Katie with her parents. Copyright, Rev. Katie Norris

title if you are a blogger. 

I dedicate this post to my Mom and Dad who have taught 
me so much about life and relationships.

_____________________________

I just saw this great video from the Button Showcase at the 2014 National Poetry Slam and it reminded me of my parents. It is called "Hotbox Love" by Jesse Parent, and while it starts off a bit unconventional, it gets to the heart of what love and commitment is. Basically, the poem is about farting- if you can't handle it if your partner farts, you should not be together. Seems trivial, but you see farther into the poem that what he is talking about is being able to see the beauty in the disgusting and difficult parts of life.

As Jesse Parent says: "...conversations on a toilet. If you can't love me in this awkward space, just live in this filthy, stinky moment, what are you going to do when it really gets bad?...Can you still love me showering me in a chair, wiping my ass as I sob 'I'm sorry' at you, putting my underwear into a trash can without saying a word?"


As a I have counseled people in preparation for marriage, and in the midst of divorce, what most couples struggle with is understanding how to manage life when it does not go as planned and life is ugly. I am thinking now I should just show them this video. And yet, most people don't believe this stuff and think the only couples who can see the beauty in the ugliness are those with perfect relationships, outside of a few hard times.

My parents have been together for 53 years and by far it has not been a walk in the park for them. Yet they saw the beautiful in even the ugliest times. I see how different this love and commitment is when my Dad and I care for my Mom who has Lewy Body Dementia,which has left her unable to move and confined to a bed or wheelchair. We change her adult diapers together, and he does not say a word as he throws her underwear into the trash can. While I also do these tasks for my Mom, it's not the same. I don't like it and it it's not easy for me. It's a different kind of love and commitment, which you can see on my Dad's face as he lovingly takes care of her and only sees beauty where other people would see something far more disgusting than, as Jesse Parent talks about, farting in the bed.

My Mom would love this poem because she and I always used to joke about couples being comfortable farting in front of each other, particularly in bed. We even made up new words to the song "Wind Beneath My Wings" and called it "Wind Beneath My Sheets." She thought that kind of comfort with each other was not only funny, but gravely needed if a relationship was ever going to survive.

When I think all of that my husband and I have gone through and all the times either one of us has contemplated divorce, I know that the only reason that has not happened is because even in the darkest times, we see love and beauty. Sometimes I am in a deep state of depression or I am so angry that I have been horrifically mean, and he still sees just a moment of beauty. Sometimes he has been totally cold and emotionally disconnected. I look at him and I just can't stand him, and I think "But he is so beautiful."

I am sure my husband and I both learned this ability to see the beautiful in the midst of the mess from my parents. My husband has known my parents since he was sixteen years old. He too knew of the "Wind Beneath My Sheets" song my Mom and I had made up. He has seen my parents go through many struggles together and he has changed Mom's diaper with my Dad.

I am frequently told that my husband should leave me due to my illness, because "no one should have to put up with that" and that mental illness is a deal breaker in a marriage. People don't understand how beauty can be seen in our life together. My husband sometimes has to pick me up, get me showered, and dress me after we might have been fighting for hours the night before and I am too depressed to care for myself. Most people say that is just too ugly to have to live with. No different than the people who say the vow "in sickness and in health" no longer applies if your partner gets dementia.

I think one of the reasons it is so hard for couples to know how to see the beauty in the ugliness and how to leave ego behind and fight for a relationship, is that we never talk about messy relationships. People often tell me not to write about my illness because it is too messy. But if none of us talk about these things, we never learn that life can be terrifyingly messy and hard, but there are ways to keep going and have a good life. If we don't talk about it, no one knows the hours and hours of therapy and/or internal work it takes for two people to stay together and to still see beauty in terrible times.

I am not saying we put up with things like verbal or physical abuse, or any other number of issues in a partnership. I am also not saying that all relationships can stay together, because there are always extenuating circumstances that are exceptions. What I am saying is that you have to realize at some point your relationship will get messy, and when it does, can you still see a bit of beauty? Can you both call whoever you have to and do whatever work you need to to in order to do your best? Can you be the wind beneath each other's sheets?

Blessings,

Rev. Katie

Sunday, April 28, 2013

Why Having Fun Creates Better Mental Health

We have been trying to add different kinds of exercise, adventure, and fun to our lives. This is good for everyone's mental wellness, but it is especially helpful for people with mental illness. We chose some activities the other day that were inspired by a few of the principles in the book Running with Nature. We got outside, laughed and played, and had some adventure.

Research shows are many reasons why these activities help create mental wellness. Being outside gets us out in the sun, which elevates the mood. People with Seasonal Effective Disorder (SAD) and depression are often treated with light therapy. Too much darkness increases melatonin. Melatonin is needed for sleep, but too much of it can make people depressed and tired. Laughing and playing is proven to make everyone happier. Taking a bit of time each day for fun means we then have enough energy for the rest of our life such as work and it even helps us handle difficult situations better. It is also said that laughter helps us heal. Some hospitals and use humor therapy as part of their program and have found it reduces the need for medication.

Copyright, Jeff Norris
In order to get all of these benefits for us as a family, we decided to use the slackline that my husband Jeff bought on a whim a few months ago. Slacklining is basically balancing on a piece of nylon that is suspended between two trees. We also spent some time on our trampoline which is always fun. I often forget to do anything fun, ever, and I was reminded how important it is to my mental health and also the health of my family.

The slackline is basically a balance exercise, which means you need to be in tune with yourself. Balance exercises require you to pay attention to your body and really focus on what you are doing. This is never one of my favorite things to focus on because I am very self consious about my size and I often feel like a big bull in a china shop. I would rather forget I even have a physical body, but you can not do that when you are doing any kind of exercise that requires a focus on balance. Slacklining helped me be a little less upset about who I am as I started to just let go, have fun, and focus on learning to balance more. I found that when I started taking stronger antipsychotics a few years ago, my balance was severely effected and even though I stopped taking them, I have never gotten my balance back. I hope slacklining will help me reverse that.

I also found slacklining brings us closer together as a family. We were all encouraging each other and helping each other get across the line. We wanted to see each other succeed and we were all engaged in helping each other reach our goals. (My son is currently working on his best yet, four steps without help from anyone.) When we were on the trampoline, I commented that our neighbors must think we are so weird. Other people have trampolines, but we never see parents using them. Our son, while jumping high up in the air said, "You guys are the best parents and the most fun!" Seriously, how could you not feel happier after hearing that?

Copyright, Jeff Norris
As Jeff was helping me across the slackline I had this profound sense that we rarely are just present with each other. The longer partners are together, the less we remember to have any daily physical contact. You hold hands less and don't spend as much time really looking at each other. When Jeff helped me go across the line, I remembered how we still need to make time to be present with each other rather than just going through our daily lives. It is all too common for couples to loose connection with each other, especially when one of them is living with an illness. It can feel like all of your life is about the illness and everything becomes stressful. Spending time together having fun brought us much closer together and allowed us to appreciate each other more. All in just an hour.

They suggest one hour of play per day in Running with Nature and I can tell that the more we try and stick to that suggestion, the better off we will all be.

What will you do today that gets you outside, let's you have fun, and is a bit adventurous?

Blessings,

Rev. Katie

Thursday, April 11, 2013

Being Shamed for Speaking Publicly About Mental Illness

I received a comment on my blog the other day which brings up an issue that affects many of us with mental illness - being shamed for talking publicly about our illness.

Here is the comment: 


"Anonymous has left a new comment on your post "The Messy Reality of Mania":

Dear Katie,
This post of yours is a true cry for help if I ever heard one. This was a truly sad and disturbing post to read. This has been viewed by many of your relatives and it upset many. I know that it must have been very hard for you to write it. This is not only hurting you, but also your husband and, unfortunately your son as well. Please, for your sake and for the sake of your family, seek a competent psychiatrist who is very familiar with bipolar disorders. I know that you do not like to be medicated, but if you work with the right person, they can find the right drug that can help you. Please do this for yourself. You are the only person who can change you. There is hope, but you need to take the first step. We all love you and want only the best for you.

A very concerned relative" 

There are many issues with a comment and action such as the one above. First, let me say, this is an "anonymous comment from a very concerned relative." This is the internet friends, and I did not think to require an email to leave comments on my blog (that will change though), so I have no idea if this really is a family member or someone else. I do believe whoever this person is, they do care and want the best for me. That is very kind and I appreciate the concern.

Photo copyright of Seanan Holland.
However, this comment is written in a way that shames people with mental illness. Maybe not on purpose, but that is what is happening. They are asking me to wear a public mask in order to not make them uncomfortable. This is much like the mask project we did in seminary where we painted the outside of the mask to represent what we are supposed to present to the world and the inside with who we really are.

Saying that me telling my story and opening up about the reality of mental illness upset many of my family members and I am hurting my son and husband is extremely shaming. This comment is saying "I am scared of your illness and so I don't want to hear about it. I will use the ultimate way to make you feel bad, saying you are hurting your family, in order to try and get you to do what I want." Whenever someone says "many others agree with me" you should probably question that. This is a common way for someone to try and get you to do what they want by backing up their statement with an unseen group of people to make you think "If lots of people agree, I must do what this person is asking of me." In leadership you learn that these unknown "many people" often end up being just a few out of the hundreds in the organization.

There is also a huge assumption that this person knows what is best for me and how my husband and son feel. All inaccurate information of which they have not attempted to verify. It is a presumptuous comment which does not allow my husband or son to speak for themselves.

This comment assumes I do not have competent medical help. Sadly, whoever this is has not actually inquired as to what help I am getting, which is a lot. I am fortunate to have more people helping me than the average person with mental illness. I am so blessed to be getting such great mental health treatment.

Out of the dozens of comments and emails I received about the blog post, only two people thought it was a cry for help. This is most likely due to a misunderstanding of what a cry for help is and not knowing much about cutting, which is why I will write a separate blog post on this topic to go more in depth on those issues. 

This comment is annonymous. This happens to people with mental illness all the time. For me it was on the blog, for others it is triangulation where a "concerned friend" tries to get to get their message of concern to you through another person. Other times it is an anonymous letter or email. 

In ministry I learned to never take anonymous feedback. Anonymous feedback is a huge red flag that warns: this issue really has nothing to do with you and everything to do with the person attempting to bully or shame you into doing what they want. Anonymous feedback leaves no room for relationship, understanding, empathy, compassion, and love. And in all honesty, true concern and love does not come from an anonymous comment. It comes from direct communication.

I know the phrase "You are the only person who can change you" is very popular. I don't disagree completely. We can not change another person. For someone to recover from a mental illness, or really deal with any illness, they need to recognize they have an illness and be open to treatment. However, mental illness is greatly affected by environment. When someone is trying to treat their illness and they are in an unsupportive environment, it is almost impossible to get better. In fact, it is really just better to get out of the dysfunctional system. The best thing to compare this too is alcohol addiction. If the family of an addict drinks around them, keeps alcohol in the house, does not support their recovery, and will not talk to them about their addiction, they are sabotaging the alcoholic. 

I understand that mental illness scares people. Many illnesses scare us. No one wants to be sick. The reality of illness is that it is messy and complicated. That does not mean we should not talk about it. The more we hide it, the more we promote this whole idea that mentally ill people are too scary to be around and we just want them to get medicated and be quiet.

You may be wondering if you have a loved one you are worried about what might be a good response to express concern for someone. Here is one suggestion:

"Dear Katie,
This is (name of family member or friend.) I read your blog post and I did not know so much about your bipolar before. I admit it was sad for me to read this, but I am glad you shared so I can know more about what you are going through. Are there ways that we can help you and be supportive of you? Please let me know what we can do. Please let Jeff and Jeffrey know we are around if they need anything as well. We love you."

Notice that this does not bring up their evaluation of my treatment of my husband and son. It does not imply that telling my story is upsetting large groups of people and thus inappropriate. It is not anonymous so I can actually contact this person and ask for help if I need it and thank them for caring about me. It does not judge my choices on treatment or judge the actions of my medical professionals. It is honest that the reality of mental illness is scary for them, but they want to help anyway.

As a side note, let me address the issue of not agreeing with someone's form of treatment, because I know that is something many people are worried about. It's valid. Sometimes people do things you think are not a good idea. When I see someone with heart disease eating a burger and fries, I too want to say "Stop doing that and get help." That is shaming and unlikely to actually help them change their behavior.

Recently I had a friend express their concern who said, "I don't think bipolar can be controlled without medication, but I am willing to support you in your decision and help you any way I can. I am here if you need me and you can call me any time." This response expresses their concerns and opinion, but also does not try to change me. It lets me know they will help me. This means the conversation is always open and they respect me, which leads to me being able to hear any suggestions they might have. It is non-confrontational, not shaming, and relational. 

It is sad that mental illness is so scary that we have a hard time talking about it and accidentally communicate in ways that are shaming and do not allow for us to help each other. I understand why this happens. It is a tough subject to talk about. I hope by sharing the issues with this comment that I can help people communicate with each other better.  

Blessings,

Rev. Katie

Monday, April 8, 2013

Movie Review: Running From Crazy

Last night at the 2013 Cleveland International Film Festival, we saw Running From Crazy, which is a documentary about Mariel Hemingway's journey to understand her family's history of mental illness. Mariel is an actress, model, and the granddaughter of Ernest Hemingway. There are seven suicides in her family, including Ernest and Mariel's sister Margot.

Photo from Running From Crazy's FB Page
This is a very good movie for so many reasons. First, there is footage from when Mariel's sister Margot was creating a documentary about Ernest Hemingway. In the footage you can really see the family dynamics Mariel speaks of from her childhood. You also hear Margot talking about her struggles, which hit so close to home for those of us with mental illness.

Second, this movie is from the perspective of one of the healthier members of the family, Mariel, trying to live within a dysfunctional family, find her own peace and her own way out to break the cycle of mental illness and dysfunction. I think it is important to hear not only from the voices of those with mental illness but from their family members as well. Mariel is so candid about her emotions concerning different family members and how she is working towards greater understanding and compassion. What is beautiful about the movie is that she is not insulting to her family, but truly seeks to understand them better and talk about the times when she may have been unkind to her sisters. She truly talks about the whole family system rather than blaming and shaming anyone. This shows in incredible amount of insight and spiritual work on her part. And she is honest that she is still working on some of those issues. She is not perfect, just like none of us are perfect.

For me personally, as someone with mental illness, I identified with much of this movie not only from Mariel's point of view but also in some of the things her sister Margot spoke of and her pain. It was healing for me to watch this movie and know I am not alone in some of my life experiences. This is why I think sharing our stories is so important. We tend to think we are the only ones stuck in a situation that is scary and we don't understand, and this creates a lot of shame. We need to know there are others out there in similar situations also striving to change dynamics, become well for themselves, and live a happy and healthy life.

Mariel talked a bit about her lifestyle as well, which she sees as essential to wellness. Rarely in the community of mental illness do you hear people talking about anything other than medication as a way to recovery. This makes it very hard for those of us who feel a different way is a better fit for them. People seem to think that I am required to take medication and I am irresponsible if I do not. Then again others say I must not really have a mental illness if I don't take medication. This is not true. I just believe that we have the ability to know what our bodies and minds need to be well and for some of us that means we need medication as well as a healthy lifestyle and for others we do not need the medication.

Our home brewed mango kombucha (fermented tea).
I loved seeing Mariel on the trampoline, being active, and talking about drinking kombucha and eating local foods. These are things that Jeff and I do, yet most people think it is weird and a very restrictive life. Mariel was also walking across a slack line, which Jeff bought a while ago and has been wanting us to try. I guess I have to try it now! It is all about finding the diet that works for you which heals your body and mind, getting out in the sun and nature, sleeping well, exercising, having fun, and having a spiritual practice in your life.

One of the hardest things about sticking with this lifestyle is that it is difficult to do if you do not live in a community that supports it. Mariel and her partner Bobby Williams created The Willing Way in order to help support other people who want a healthy lifestyle. This is important in terms of general community support but also, I find it difficult to find healthy living supporters who also understand mental illness. Many of these groups are quite unsupportive of those of us who can't just make a decision one day and stick with it forever. We are seen as weak and selfish. I think Mariel could be a great voice for understanding and acceptance for those of us struggling with mental illness who want non-pharmacological ways to reach recovery.

I recommend seeing this movie to give real insight into mental illness from a whole family perspective. It shows the reality of mental illness, but it also the hope that exists as well.

Blessings,

Rev. Katie

Friday, April 5, 2013

I Want an Off Switch!: Practicing Skillful Means in the Midst of Mental Illness

I won't go into explaining all the ways in which my bipolar is all kinds of whacky this evening- from depressed to angry and back and forth again. I will say, it feels awful. I will say that when it gets this bad, I can't hang on to all the things my therapist and I discussed such as meditating, eating well, going to sleep, using energy work to calm down.

Now, when I am not doing well, I tend to bug my husband in a myriad of different ways, and this week he is out of town. I was texting him frequently this evening, and of course he is trying to sleep at 3am so he can work tomorrow. So, he turned off his phone. This infuriates me. My irrational mind says he just does not care about me and he is a jerk. My rational mind tells me he has already responded about a million times and he is exhausted and needs to work tomorrow. I also know he is the best husband ever and is way more compassionate and helpful about my illness than most partners of people with mental illness are. It's good for him, and us really, that he turned off his phone because then there is less risk of us arguing. (Although I don't think he will like all the texts he finds on his phone when he wakes up in the morning.) When I get through this extremely bad time, my rational side will take over and I will not be angry at him anymore.

However, I was thinking that it must be so nice for Jeff to get to turn the illness off. With his phone off, he no longer needs to hear it, see it, or be affected by it. He gets to go to bed and leave it all behind. I am jealous. That must be so nice.

I don't get to turn my bipolar off. I have to live with it every second of every day and on the days when it is bad, that is excruciating. I want an off switch. I want to be able to calm my mind enough to meditate for even two minutes. I want to fall asleep. I want to be happy. I want to work tomorrow. I want to be a good mother. I would like to clean up the house so my husband comes back from his trip with no work to do. I want what every other person with most any illness wants, to be able to get rid of it.

I don't get that choice.

I do get to choose to go to therapy and keep working so that these terrible times happen less and then my bipolar will be more under control. It is not like I think I have no agency in my life. The problem is that sometimes when the illness gets so bad that it has completely taken over your mind, and in those moments you rarely have a choice. Or, the choice is to try and do the least damage to your life as possible. I don't think people without mental illness know that when we are manic or depressed, we are trying to make good choices and have agency in our life. We are trying to control it. In reality for many of us, what our brain is pushing us to do is way worse than what we actually end up doing.

It's like when you learn to ice skate and one of the first things they teach you is how to fall. It is a given that you will fall while ice skating, so if you have to fall, you learn to do it in a way that will produce the least amount of damage possible. Basically, that is what we do with mental illness. To use a simple example, I can not make myself sleep right now. My brain wants to push me to do really irresponsible things, so how can I "fall" and obtain the least about of damage possible? I try to scrapbook, watch funny movies, read something, basically do anything other than the normal manic behavior of driving all over the city at night or leaving home. (By the way, my son is sleeping over a friends house so there is no risk that I will be leaving him at home alone.)

While I don't get a switch, I know that I am lucky. It could still be worse. I have been living with this illness long enough to know how to fall without being so destructive that there is rarely ever no turning back. But I completely understand when people end up running out in the middle of the night driving to another state, or go downtown and jump in a fountain naked. Or when they drink into oblivion, or even when they commit suicide. I get it. We have no button that we can turn off and just walk away from the illness. Frankly, most people do not have access to adequate help which shows them how to fall with less damage.
Photo of Avalokiteshvara by Cea in Flickr Creative Commons

The "falling" is really what the Buddhists call skillful means. Simple put, this is the ability to adapt to your situation and be able to use whatever means necessary to navigate what is going on. My favorite Buddhist Bodhisattva is the Bodhisattva of Compassion. Kwan Yin is the female version of this Bodhisattva and the male version is Avalokiteshvara, the Bodhisattva often pictured with many hands. What most people do not know about the many handed Bodhisattva is that in each hand there is often a skillful means that he can use to help someone on their path to enlightenment such as musical instruments, bottles of ambrosia, flower, anything one might need to help end suffering. These teachings of Buddhism, skillful means, meditation, and being present in the moment is what has enabled me to learn how to fall with the least amount of damage. While I have no off switch, these Buddhist principles have given me more agency in my life even when my mind is too sick to give me much of a choice.

Blessings,

Rev. Katie

Friday, March 29, 2013

Unhelpful Advice from Professionals

Picture if you will for a moment, a doctors office. A husband and wife sit across the desk from the doctor and he has just told them that the wife has cancer. She will need surgery, weekly doctors visits, daily medication and he is not sure if the cancer is curable. This will be a long road for the couple. Then the doctor turns to the husband and says "You have a lot going on right now with work and managing your diabetes, there is no need to let your wife's issues add to your difficulties."

Now, you may not think that this doctor is all that compassionate or understanding. He basically told the husband that his wife's cancer is her illness alone and he should not be bothered with caring for her. You may think advice like this does not happen often, but it does, at least for caregivers of people with mental illness. 
 
I talk to people all over the country who are caring for a loved one with mental illness. Parents, siblings, partners, friends. The advice above is a fairly common from some people in the helping professions (ministers, counselors, therapists). I think is unhelpful at best, damaging at worst.

This advice is some form of: "Do not take on someone else's problems" or "You have enough going on in your life already, there is no need to let (your partner, child, etc...) add to your difficulties."

I understand that this is well meaning, as a way to help the caregiver put up some boundaries and make sure that they care for themselves in the midst of helping another person. This advice can also sometimes mean that as a caregiver you do not take on your loved ones insecurities, insulting behavior, or irrational thinking, if they have any of those symptoms. (By the way, having mental illness does not mean everything we do is irrational).

While the advice is well intentioned, it also comes with a whole lot of assumptions, stigma, and judgement. In fact, it is advice that I am pretty sure you would never give to a caregiver of someone with any other illness.

This advice, given mostly to caregivers of people with mental illness, assumes that mental illness is a choice. It assumes people with mental illness are just trying to make life difficult for others and that they are inconsiderate. It assumes that we have no community responsibility to care for people with mental illness, because they bring it upon themselves. This advice leads to caregivers loosing compassion and empathy for their loved one.

So, what can you say instead to get the message of self-care and boundaries across and not use a phrase that stigmatizes mental illness? How about something like: "Make sure to take care of yourself as you care for your mother and if you need help and are overwhelmed, ask for help." Then brainstorm a list of people they can ask for help when they need it. Or say: "I know your partner is saying unkind things to you, which is inappropriate. You do not need to take on their beliefs about your as your own." Suggestions like these do not assume the person with mental illness is a burden who has chosen to be a burden, and whom the loved one (who willingly entered into a relationship with this person) has no responsibility to help care for them. It is also a big assumption to think that the caregiver has no bad behaviors which might be exacerbating the situation, so don't blame it all on the person with the mental illness. You really need to look at the whole system to give good advice.

Often people argue with me that "If someone has mental illness and they have bad behavior, that is an extreme situation and unlike anything else, so you need to just walk away." Untrue. I hear couples all the time who treat each other terribly. Neither has mental illness, but they yell and scream at each other, they blame and shame. Parents call their kids "irresponsible brats" and make them feel unworthy. Parents feel overwhelmed at the daily caretaking of their kids. People with all sorts of other illnesses have bad days where they lash out at their loved ones caring for them. This is all about managing communication and environment to enable the best relationship possible so that the person with mental illness is cared for and loved and the caregiver is not burnt out and they also feel loved.

Blessings,

Rev. Katie

Tuesday, October 23, 2012

This Was Not Part of the "Package"

Over the last few months, a few people have asked me some form of the following questions:
Did you have your bipolar diagnosis when you married your husband?
Did he know that was part of the "package" when marrying you?


My husband and I met when we were 15 and 16 years old. We knew I was sad a lot and that I had really bad anxiety but I did not see a therapist and psychiatrist until I was 19 years old and we were in college. At that time I was diagnosed with only depression and an anxiety disorder so that was all he knew when we got married at 21. At that point I was on an SSRI and doing a bit better but then we moved out of town and I got a lot worse. I went back and forth on medications being treated for depression, not knowing I had bipolar and the SSRI's were triggering mania.

High School Graduation, 1996

Many people assume my husband has always been understanding of mental illness and supportive of my treatment but really neither of us understood what was going on and in the early years he still thought mental illness was a choice. He is a left-brained computer programmer and logic makes the most sense to him so having a wife that does not have a hold on reality was hard for him. He did not really read much about mental illness and did not go to doctors appointments with me in the beginning. We fought a lot and were not sure if we would stay together or not. We had many dark times.

We struggled like this for five more years until after our son was born and I was finally diagnosed correctly with bipolar disorder. At that point, after so many years of us struggling, he did start to do more reading and went to a few doctors appointments with me. As we went back and forth with treatment, he got more and more involved in helping me. He has always wanted to understand what I was going through but it is really hard for people who have control over their mind to really get what is happening to their loved one.

Today we still we struggle with treating my illness. (Sometimes It's Hard to Stay Together) Some days one of us is not entirely sure we should still be together. My illness was clearly not part of the "package" Jeff married. And honestly, he is not the same "package" I married either. The whole marriage "package" idea actually really bothers me. No one stays the same forever so thinking that you married a "package" is unrealistic. Both of us understood from the beginning that marriage is not perfect and the one you love will change a lot over the course of your lifetime.

For me, seeing my father go through serious illness and the other challenges my parents had, I knew that people do not stay the same forever and that marriage is hard. Life will throw sickness and many other horrific things at you, but you promised on your wedding/commitment day to get through those things together, in sickness and in health. I think the biggest problem with mental illness is that either the person with the illness does not think they have an illness and/or their partner does not believe it is an illness either. If one or both of you can not accept that this is an illness, then you do not know the correct way to manage it. You blame each other and think that you have a "deal breaker" in your marriage.

Wedding, 2000
None of us really has any idea what we are getting into when we marry/commit to someone. I have no idea why Jeff and I have been able to stay together except that when each one of us thinks about life without the other, it makes us sad. That sounds very simplistic, but it is what keeps us going. And it is not like we have not had times that absolutly would qualify as a "deal breaker" (as Dr. Phil says.) Jeff did not sign on for a wife who is sick, and will be for her whole life, with behaviors that negatively affect him.

We both agree that if either one of us was to hurt the other emotionally or physically and we were not getting help or did not admit we had a problem, that it would be wrong to expect the other person to stay in the relationship. We do believe in each other though. We believe that if either one of us is going through something, that we will take responsibility and get the help we need. The problem with mental illness is that it is extremely hard to treat so you have setbacks and you will not always be well. People with mental illness have high rates of non-compliance, which is not stubbornness or laziness, it is a symptom of the disease so it is not an illness that you treat and never have to deal with again.

In order to handle all of this, I encourage couples to go to doctors appointments together. Make sure everyone in the family is physically and emotionally safe and if they are not you may need to be apart until things are more stable but if the person is in treatment that does not mean you need a divorce. You really have to work closely with your doctors to decide the best options are for your family.

Two books that have really helped us are The Five Love Languages by Gary Chapman for general relationship help (given to us at a Couples Retreat at John Carroll University) and Loving Someone With Bipolar Disorder by Julie Fast.

Our best recommendations to couples are:  You HAVE to talk to each other. You have to see your doctor, together. You can't see marriage as a "package" that you bought and which stays the same. Don't have a big ego and either of you blame everything on the other person because both of you will make mistakes over and over again. Marriage/partnership is not easy and couples need help in order to make things work. ALWAYS ask for the help you need, and actually take the help given to you.

Blessings,

Rev. Katie

Saturday, September 1, 2012

Breaking the Silence: Joint Sermon by Husband and Wife

Many people have been asking me for the sermon my husband Jeff and I gave about mental illness. The title "Breaking the Silence" is inspired by NAMI's educational program created to destigmatize mental illness. My part is from the persepective of patient and his from the perspective of the partner of someone with bipolar disorder. We hope it is helpful to you.

Blessings,

Rev. Katie and Jeff

Breaking the Silence Part I: Rev. Katie Norris

One out of every three Americans suffer from a mental illness each year. That is 32.4% of our population. The odds are very high that you know and love someone with a mental illness. You work with them and your children are friends with them. It is very likely though you don’t know the majority of them have a mental illness. This is because the stigma against mental illness is high. I can’t tell you the amount of times I have heard people say they would never hire someone who is bipolar, or that depression is fake, or call people with schizophrenia a freak. This happens in every kind of setting I have been in. Parties, workplaces, schools, even in our churches.

One time at a seminar at General Assembly, which focused on using social media in churches, a fellow minister said he did not want to start a Facebook page for his church that allowed people to comment on the page because, and I quote, “there are a lot of people in our area with bipolar and I don't want them posting things that will cause problems.” I was shocked and devastated at the ignorance of this person who is called to uphold the first principle of Unitarian Universalism that says everyone has inherent worth and dignity. I almost turned to him and said “I have bipolar disorder and it sounds like maybe you don’t know enough about it, would you like to talk about it?” But, I was too tired. Some days you pick your battles and that day I just didn’t have it in me, again, to try and defend my inherent worth and dignity as well as the inherent worth and dignity of others with mental illness.
  
So yes, I have bipolar disorder and a panic disorder and it is an illness I live with like any other chronic illness. I knew I was sick at the age of six, but was not treated until I was nineteen and not correctly diagnosed until I was twenty five. This means that I have the same kind of up and down moods that Eli the bipolar bear from our story has. It also means I have frequent panic attacks. When I was younger I was scared to ever leave my house. Now I live with my panic attacks on a daily basis and just kind of muscle through them because if I didn’t I wouldn't go anywhere or do anything. This has been a long road my family and I have been on, which we still continue to navigate because mental illness is extremely hard to treat.
  
Many people ask me what it is like to have mental illness, and there is really no good way to describe it. It is hard to come to terms with the fact that you have an illness in your brain which effects your behavior and abilities. For me, often music can explain things better than just plain words can. So I have a song for you from the musical Next to Normal which is about a woman with bipolar disorder and her family. In the song, called "You Don’t Know," she is trying to describe to her husband what it is like to have mental illness and the fact that he really does not know what it is like having not experienced it himself. The words and music speak to the pain and confusion of what mental illness is really like.

Music: "You Don’t Know" from Next to Normal

The biggest struggle in raising awareness about mental illness, is, as the song suggests, most people just don’t know what it is like to have it. People seem to understand physical illnesses, like cancer, diabetes, or a broken arm, because you can easily see or test for these illnesses. Mental illness is not something you can look at like a broken arm, or easily test for. It is an illness that is unseen and comes out in behavior changes more than anything else. Due to this fact, people believe many myths about mental illness and I would like to address a few of those myths today because breaking down those myths means we can truly start to help people.

The first myth is that many people assume mental illness is not real. This is not true, it is a chemical imbalance. While in the past there were no tests for mental illness, they are now finding in brain scans that you can see the difference between a mentally ill brain and the brain of a normal person.

The second myth is that people with mental illness are just lazy, stupid, or mean and should be able to control themselves. It is hard for people to understand why someone can’t control their own behavior at times. Because of this often friends and family of people with mental illness label their loved one as lazy, irresponsible, or mean because of the way they act. However, mental illness means chemicals in your brain make your brain do things you don’t want it to do. We are not trying to be mean, we are not lazy, or stupid. We want to be well just as much as you want us to be well. This is probably one of the hardest things for people to understand and have compassion around and Jeff will speak about this a little later as this is one of the biggest struggles for family members.
  
The third myth is that if we just take medication, we get better. Science has not really perfected treating mental illness and for many of us the medications do not work well enough or are so toxic that the side effects mean you have to stop taking them. Or the medication takes all of your personality and life away leaving you empty and cold. Medication is not an easy fix so one way to help someone with mental illness is to understand their struggles with medication and not judge and yell at them for not taking it. Also, there are many lifestyle changes which are just as important as medication which can help treat mental illness, such as exercise, sleep, spiritual practice, and diet. We can help people maintain those changes by being understanding of the restrictions this puts on their lives instead of making fun of them for it or insisting they don’t need to do it.
  
The fourth myth is that people with mental illness can not be productive members of society. People assume we can’t have families, hold down a job, and our opinions don’t matter. In October of last year, an article came out in the New York Times which showed how work is often an effective way of managing your illness as was told in the story of a woman who has scizoeffective disorder but also holds a high profile executive job. Her job gave her meaning and purpose in life, all she needed was the ability, when her illness got bad, to have some time off or even bring her therapy dog into work with her. Research now shows that people with mental illness are often good at very demanding jobs because we understand crisis and urgency better than most people. If our society could be more understanding about these illnesses and give people more flexibility in their jobs, we could lessen the amount of times people end up hospitalized. Unfortunately, as for many illnesses, it is hard to get this kind of understanding in the workplace. This is something we need to work for in all areas of health and wellness. 
  
The fifth myth is that children can not get mental illness. Mental illness can happen to anyone at any age and we can not just assume that repeated behavioral issues with a child are just because of a spoiled, ungrateful child. We don’t want to over or misdiagnose kids, but we do need to pay attention when kids are exhibiting serious problems. I can tell you from experience it is devastating as a child to have mental illness and let it go untreated as it makes life agonizing, confusing, and you often feel like a bad person. Adults and children alike make fun of you and judge you for being different. That is one of the reasons I think our faith is so essential to our children who may have mental illness. We teach that they are loved just as they are and we will work with them to create environments which help them thrive. That is why we try to have religious education that is accessible to all learning and mental abilities. This faith will save those children from living in a culture that says they are bad and wrong for having an illness. We are the loving and salvific voice to those kids, and even adults, as that is what I heard in a Unitarian Universalist Church when I was twenty-five. This faith told me I was loved and they believed in me as a whole person, which meant I was able to do many valuable things with my life.
  
This leads me to the sixth myth I want to address, that we as a society and community can not help people with mental illness. People often say that people with mental illness can’t change and what we do does not affect them so we should just leave them be and let them suffer the consequences of their illness alone. In reality, the best way for someone to manage their illness is to have a large supportive community around them. People who help them keep up with their treatment plan. People who call and check on them to see how they are doing. An understanding work environment, and people who also help check in on family members as well.
  
This can be a fatal illness for some of us but the more we raise awareness and create a supportive community, the less likely that is to happen. And when it does happen, we need to be the ones to support the families and friends during such a difficult time. If we don’t understand the illness, we can’t adequately help them process what happened.
  
Most importantly we as a church community can help by making sure that people have a faith which is realistic about what mental illness is, which brings me to the last myth. Sadly many faiths promote the myth that mental illness is actually evil spirits that take over a person, or a person only gets mental illness if they have been bad and need some form of punishment. As Unitarian Universalists, those teachings go against everything we stand for, so instead we can be the faith that says we understand. We can be the faith that welcomes people with mental illness into our communities and gives them volunteer opportunities which speak to their heart and soul. We can be the communities that help people find nourishing spiritual practices, which are proven to help in the management of mental illness. We can be the community that does not stigmatize and judge. We can be the faith that creates a larger support system not just for the person with mental illness but for their family as well. We have a chance, in our churches to help end the pain that comes from the stigma of mental illness, if we just seek to understand it better.
  
This is what I, as a person with mental illness wanted to let you all know, the truth about these diseases. Another truth about it is that mental illness, as with all illnesses, affects the family in a very deep way. It is often most hard for family members to understand what is going on and discover ways to help. My husband Jeff is here today to share some of that experience with you.

Katie & Jeff
Breaking the Silence Part II: Jeff Norris

I’ve known Katie since she was 16 years old. She was always a little emotional. When we first started dating, we would spend hours talking about whatever was going on in her life. We discussed the play-by-play analysis of the soap opera that is high school. I never really thought that this was different than what anyone else went through.

Fast forward 5 years, and we had just graduated from college, gotten married, moved, started a new job, and I started graduate school. It was almost like we were trying to squeeze as many stressful events as possible into a single summer. We were living in upstate New York, about 8 hours away from family, and Katie was struggling with her own identity, while I was busy working.

Katie was seeing a doctor for depression, and we were constantly fighting about how to share work around the house. It was not unusual for us to be up fighting until 2 AM about who should be doing the laundry or sorting the mail. I was mad because I had to do what I thought was more than my fair share of the chores. I hated that I always had to be the one to pickup the slack.

Looking back, I really didn’t get it. I found myself falling into the trap of calling Katie lazy, because I didn’t have enough awareness of what was really going on. I couldn’t see that her limits were not my limits, and that fighting about those limits only made our relationship worse. I should have been supportive and helped Katie to work from where she was, but instead I fed into the disease and actually made things worse by fighting with her and making her feel guilty about what she couldn’t handle doing. Our relationship could have fallen apart back then because I didn’t know how to handle the disease.

Fast forward another 5 years, just after our son was born, we figured out that Katie’s illness was not depression, but bipolar disorder, which is the combination of depression and mania. For the last decade, we had been ignoring half of Katie’s symptoms. I had no idea that being overly productive and not needing very much sleep was actually a problem, and a sign of an impending crash. Once I had a better understanding of what was really going on, there were things that I could do to help make things better.

I think of helping someone with mental illness as being analogous to driving a car.

First you need to point the car in the right direction. For us, that means taking the proper medications, getting enough sleep, eating right, spiritual practice, and exercising. For others, it can include meditation and massages.

Second, you need to plan where you are going. For us, this means thinking about major events that are coming up like family activities, travel, stressful work, or even changes in the seasons. We need to make sure that we are not over booked and that we have a plan to get through the events. Sometimes it means saying no to things that we might have otherwise done.

Third, you need to pay attention to where the car is actually going. For us, that means watching for signs that things are starting to go badly. Some of those signs include staying up late, empty candy wrappers appearing around the house or starting dramatic projects like reorganizing her office. Each person has slightly different signs, so it is important to understand how your friend or loved one responds.

Finally, you need to carefully steer the car back to the center as soon as you notice that you are going astray. For us, that can mean a doctor’s visit, increasing dosage of medication, or something as simple as taking a walk. For others, it can mean a trip to emergency room or a stay in the psychiatric hospital.

Just like driving a car, managing a mental illness requires making constant small changes and periodically following some pretty complicated detours. I know that since I am traveling though life with someone with a mental illness, our journey will not be as simple and straightforward as it could be. I also know that my life is richer because we are traveling together.

Breaking the Silence Conclusion: Rev. Katie Norris

The last thing I want to say is that mental illness is not all bad. My illness makes me who I am and I appreciate that. There has been a lot of research done lately on the positive sides of mental illness. Dr. Nassir Ghaemi says depression enhances empathy and realism, and mania enhances creativity and resilience. They are continually finding more positive sides to these illnesses and newer and better treatment options, which means there is always hope. If we can create supportive communities and advocate for better research and end the stigma, the future can look bright for people with mental illness. May this be what we work for in our churches and communities as this allows us to live out our first principle that says everyone has inherent worth and dignity.

Wednesday, October 26, 2011

A Partner Who Understands Bipolar Disorder

My husband went with me to see my therapist the other day. (Sometimes it is good to take someone close to you with you so they can bring another viewpoint into the conversation.) We were talking about how one of the worst times of day for me is at night. That is when I typically get very angry and irritated. I will stay up most of the night and often wake my husband up and talk to him, and even argue sometimes. My therapist asked him: "So, you bear the brunt of the effects of this?" I immedatly thought that yes, he does. He is the one I talk to all the time and he sees me at my worst. To my surprise though he immediately said "No, I think Katie bears the brunt of it."
My Amazing Husband, Jeff

I am continually reminded of how great my husband is and I beleive his answer was far different than what most partners of someone with bipolar disorder would say. Jeff understands that while it is hard for him to be married to me at times, bipolar is a horrible illness and I am the one who deals with it the most.

Jeff and I have been together for 17 years and most people tell me that since he is the one who has to deal with me the most, he is the one who is most affected by my illness. Most people do not think about what it is like for the actual person with bipolar disorder. Fortunatly, my husband does know that in the end, the disease affects me the most. His answer to my therapist allowed me to let go of some of the guilt I have over this illness and it helped me have more self respect. His immense love for me has helped me love myself. It also reminded me that Jeff really does understand what I am going through.

It can take a while for our partner to understand our illness. Jeff did not immediately know what bipolar disorder was all about. He did a lot of work, a lot of reading, and he has gone to many doctors and therapists with me. Since mental illness affects everyone in the family, it is extremely important that your partner is involved in the treatment of your illness. It is very important that they know how your bipolar disorder manifests itself so they can understand that what is going on is not you trying to be mean, it is a disease. It is important that they learn ways to help you.

Two books we have liked which can help you and your partner are Loving Someone With Bipolar Disorder by Julie A. Fast and John D. Preston Psy.D., and When Someone You Love is Bipolar by Cynthia G. Last, PhD.

I am grateful for all that my husband has done to understand bipolar disorder and how it affects me in particular. This means we can work together to manage this illness.

Blessings,

Rev. Katie

Friday, September 16, 2011

Faith in My Wellness and Our Future

When things get bad, as they are for me right now, sometimes a loved one says something that helps you laugh in the midst of despair, or helps you feel loved in the midst of darkness.

The other day I said to my husband "You want to divorce me don't you?" He laughed and said "No, but I would like it if my wife was a little less crazy" and he gave me a hug.

He has faith that somehow I will get back to my "less crazy" self. I think he is right, but I still don't know how he makes the choice, every day, to stay with me anyway.

Again, a song from the musical Next to Normal explains it so well. Here are a few of they lyrics from Why Stay?/A Promise:

Here's what I say to the girl who was burning so brightly
Like the light from Orion above
And still I will search for her nightly,
if you see her please send her my love.
And the boy was a boy for all seasons
That boy is long lost to me now
And the man has forgotten his reasons
But the man still remembers his vow.

A promise a man says forever
A man says I'll never regret or let you
The promise I made to stay and I stay true.
Knowing one day we'd remember that joy.
You'd remember that girl
I'd remember that boy, till we do
The promise I made I'll make it brand new.
A promise that I made to you.


To me, it's not so much about the promise he has made, but the faith that he has. Faith that thing will get better, even though we have been going through this for seventeen years. Faith in the vows that we made to stay with one another through good times and bad, sickness and health. However, it is not a faith in some outside force that will make things better, he has faith that we can get through this together.

Me and my boys, who always have faith in me and our future.

Blessings,

Rev. Katie

Wednesday, August 10, 2011

Do You See What I See?

Sometimes I don't realize how odd my bipolar mind can be unless I am talking to my very rational, very linear, very stoic husband. I don't know how he does not see the world like I do. How come music does not bring him to tears, or make him feel deeply connected to something larger than himself. How come sad stories in the news don't make him feel as if the world is doomed to be horrible forever? How come stories of incredible generosity do not give him faith in humans and hope for a better world? Why isn't everything either filled with beauty, music, and color, or darkness and despair? Why can't he stay up until 3am because some issue is so important that we have to talk about it right now? Why can't he feel another person's pain or fear? Where is all the passion, beauty, fear, and anxiety in life?

I feel like he is missing out on life at times, but I am pretty sure if both of us were this way we could never stay together. It frustrates me that sometimes I can not connect with him on the intense level I function at each day. I am a little sad that he will never see what I see. However, it is his stability and logical yet creative mind that keeps my overly creative mind from taking over our lives. His mind makes him great at what he does, and mine makes me great at what I do.
He always says he likes how I am more artistically creative and more empathetic than he is. He feels he has learned a lot about how to care about other people and connect socially from me. He has taught me how to take my instincts and process them so I know what logical next steps to take. Together we make a pretty good mix.

It is hard not to feel alone in your illness if people around you do not see life as you do. This is one of the things that can break up people who love each other. It seems like you can't connect sometimes, or your partner does not understand you. Just because others do not see what we see, that does not mean we are alone. It is up to us to realize  we still have connections with others and it is probably our differences that make us great partners or friends.

Blessings,

Rev. Katie