Illness in a Relationship

Louie and Steve

It’s a challenging thing to do to be in a relationship when you’re so sick. When you just want to go hide in a hole so much of the time and close the world out. When you feel like you just can’t stand a cheerful face in the morning and wish to hell that you could just be alone and never see anyone ever again. But that’s not how it is when you’re in a relationship with someone. You have to learn to cope differently.

I’m a lucky guy. I have a man who loves me to death and would do most anything for me, and has. He’s really a great guy and I love him immensely and hope to be with him for the rest of my life. This is a different thing than I’ve known for most of my life. I’ve been in several relationships but none that were this intense or had the potential to last as long and be as much as this one. We might even get married but I’d lose my benefits so I can’t. But that’s how we feel about each other.

What I want to write about is the way that I try to cope with living with a basically healthy, cheerful, stable person when I’m so often none of those things. He greats me each morning with  “Yay, Steve is awake and up and about again! Hoorah!” Sounds goofy doesn’t it? And it is. It’s also so sweet it makes my heart clench when I feel so rotten and like I’m the last person in the world who should have someone say something nice about me. Why should I be showered with loving attention?

But I accept it because not to would just be churlish and tho I can be that way I’m choosing not to do that these days. I’ve grown up a lot in the last 5 years we’ve been together, first as friends and lovers and then as partners. We’ve come thru a lot in that time, more than many people might have done. We’ve traveled across the country a couple of times and down to CA twice. That’s a lot of one on one time and if you can travel well together you know you’ve at least got a chance. And we do travel well together.

And we went thru the death and loss of my only brother to AIDS during the time we’ve been together and he helped me thru that difficult time like we’d been best friends forever. He was totally there for me and didn’t ever complain about the difficulties, which there were, and all the problems we had to face with his passing. He earned my trust then and has kept it ever since thru many issues.

I have a hard time not resenting him sometimes tho and I really hate myself for that. It’s unwarranted and unkind, but perhaps understandable in the circumstances. He’s so healthy and really doesn’t understand what I live with tho he does try as hard as he can and he does a good job. But it’s impossible for someone to really understand someone who’s got as many health problems as I do and is in so much pain and distress when you’re Not. It’s OK, it’s just at odds with one another.

This is where communication comes in. Without it we’d be dead in the water. We talk. Not obsessively like I could do, but he’s not that way and so I’ve toned it down a bit and realized that maybe I talk too much sometimes about my problems. It’s good to give them a rest sometimes. But I do talk with him and just let myself be who I am, whatever that is, and he accepts me for that and doesn’t hassle me. Even when I just discovered that I’m totally impotent he just said “well you’ve had a good run and we still have a good sex life so don’t worry. I still love you.” I had a hard time with that one, but he’s right and I know it. He’s stable that way and I’m not so much so. So I adapt and change and grow.

And he’s changed a lot since we’ve been together too. He listens to me better than he used to and he’s more patient. He’s seen enough times of my losing it and at the end of my rope to really get it by now. He listens to me tell him when I feel like I want to just die and he reminds me of all I have that’s worth living for. He keeps me here as do some of my friends, and for that I am so grateful. He may use humor when I feel like crap but I’ve learned that underneath it is a deep caring for me and so I may not laugh at his stupid jokes but I appreciate where they’re coming from and it helps me. And he gives me hugs too. I like the hugs a lot…

Many times I’ve come to him in tears when things didn’t go my way or I hurt too much or I still feel like the world is crashing in on me and he’ll listen and offer some obvious statement about how things might be and it changes me. It forces me to live up to all my ideals about how I know I can be in the world with other people. I have to change my attitudes and expectations and not just to please him. I don’t mean that at all. I do it because he gives me another way to see things that is so different than mine that it helps me. And I need all the help I can get, believe me.

So tho it’s a hard way to live sometimes and I really hate it on certain days I let myself get up and face the day with him every day, open and alive to the myriad possibilities. It’s a great life and I wish everyone who wanted a partner could have one like I do and experience the joy I’ve found and the stability. I’ve been more stable since we’ve been together than I have been ever maybe. I dunno, it’s hard to tell. I’ve been such a mess so much of my life. And I still am sometimes.

But not nearly as often and I know this relationship has done this for me. That, and a hell of a lot of hard work on my part too. It’s work to be in relationship with someone as close as this. But it’s worth it every minute, even when we argue and disagree we’ll talk about the problem because we want to work things out and deal with our differences in good ways that are clean and honest. Honesty is paramount for me. I need to know I’m being dealt with fairly and I do the same for others. And I get that with him, even when it’s hard for us both.

I’m not saying we’re a perfect union. I don’t believe there are perfect unions I guess. But what we have is so amazing to me that it’s worth all the work I have to put into it all the time. I have to swallow my bile and get over myself and just let things be. And he has to do the same. It’s a mutual affair and we’re doing well at it despite our problems. So for me being in a relationship and being sick isn’t insurmountable, in fact it’s a good thing for me and I thrive in it.  I wish the same for others.

Peace,

Steve

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Fighting the Stigma of Invisible Illness

Liberty

Stigma: “A mark or token of infamy, disgrace, or reproach” – the Free Dictionary. Synonyms: blot, brand, onus, slur, smirch, smudge, stain, taint. Sometimes I feel like a walking exemplar of stigma. I feel stigmatized for so much of who I am. My Mental Illness /Manic Depression, (“You’re just making it up”), my Chronic Intractable Pain (“You don’t Really hurt that much”), being Gay (“You’re sick and going to hell”), being on public assistance (“You’re just a leach on the economy”), my Migraines (“You must want to have them”), my Fibromyalgia (“You’re just faking it”), even my very Core Being filled with Invisible Illnesses (“You’re just a hypochondriac”).

All of these are hurtful to hear, but some of them are downright dangerous and cause me a lot of suffering and despair. They cause me to fear for my life at times in fact, like now when there’s such an outcry over mental illness in the media and calls for registering us and locking us up and putting us in hospitals or prisons or somehow denying us our civil rights. It’s a scary time to have these illnesses or conditions. But it’s been worse throughout history.

Mental illness has always frightened and even terrified people and understandably so. It Is scary. It’s scary to live with it. People have almost always reacted to those of us with mental illness with distrust at the very best and loathing, disgust and violence at the worst. They locked us up and put us in prisons and mad houses and experimented on us in hideous ways (look at Adolf and his minions and what they did to us). It’s been like that all thru history, but we supposedly live in more understanding times now, don’t we?

It’s a terrible and frightening way to live your life and if you don’t live it it’s hard to understand it. And understanding is the basis for combating stigma and we’re not getting it. We’re getting knee jerk reactions instead of calm logical discussions and solutions. We don’t need more lockdowns, we need more health care to find those who are on the edge and help them before they cause harm to themselves or others, tho most of us harm ourselves far more than we do others. What we’re really facing is Stigma. So where does stigma come from?

Fear is the basis of stigma, and ignorance is the basis of fear. When people don’t understand something they often become fearful in general. If people respond with a fearful attitude towards life that leads to all sorts of potentially unwarranted assumptions and reactions, not reasoned responses. Fear and ignorance are the enemies, so how do we respond to them? We respond with education and logic and examples of why it’s OK to not be afraid.

We respond by letting people see us as who we are and letting them get to know us so they can see we don’t pose the threat they fear. We show them the truth and not the distortions of the sensationalized media presentations they see and hear all over. In short, we come out about who we are, however that may work for you in your life.

I’m a strong believer in coming out about who we are, whether it’s mental illness or being gay or whatever your issue is. I believe that if people get to See who I am, with all my Invisible Illnesses, then they can see that I’m a decent person and that my condition isn’t one that need cause them distress. I’ve found this to be true on countless occasions and I do it every opportunity I have when I can afford to make that commitment of time and energy. And it does take a commitment and energy to do it. It’s not a decision to take lightly.

I know there are situations where you just can’t do this and it would be literally life threatening to do so. I’m not generally talking about those times tho perhaps those are the most important ones. Look at the Civil Rights Movement. People put their lives on the line then to make the point that they deserved dignity and we may have to do the same on this occasion. We may have to become Visible.

It scares me frankly but I’ve done it and it’s been totally worthwhile and I’ve changed people’s attitudes with my actions. When passions run high it’s a hard time to appeal to the rational side of a person and they may not listen to you even tho you’re making good sense and they may know better in cooler times. But when you can do it I think you need to try to overcome your invisibility.

But there are true bigots and racists and people who are so prejudiced towards you and who you are that no amount of friendly talking is going to ever change their minds. These are the ones that it may be wisest to avoid at times when they hold power over you, but ultimately they’re the ones who need to be changed the most. But it’s not gonna happen and I’m at a loss as to how to deal with them sometimes.

Some people are just haters and that’s the way of life I’m afraid. They think they know better and they’ll tell you to your face why you’re evil and sick and deserve to be stigmatized without a qualm. It may or may not be appropriate to love your enemies but it’s definitely wise to at least recognize them.

I don’t mean to say that people can’t change. I’ve seen them do it. But some issues are so deeply entrenched in people’s psyches that it may be impossible to root out the cause of those prejudices and feelings. These are the people who need help in my opinion. But sometimes you have to fight fire with fire.

So help for them may come in the form of stopping them from behaving in hateful ways, and that may mean blocking them with laws for hate crimes or taking away their rights until they learn to play well with others. I’m sorta hard line about this and think that these people are the true criminals and should be the ones who are locked up, not those of us who are sick and ill, or who are gay or different in other ways.

We need better education but we also need laws to protect us and our civil rights, not laws that block us from being who we are and take away those rights thru forced commitment when it’s not necessary, tho I believe there are times when it is necessary. Sometimes you have to lock someone up for their own protection or for society’s and I have no problems with it as long as their rights are protected with due process, which is very tricky. Which is why we need good laws and intelligent discussions of them made in reasoned situations and not in the heat of passion.

So what I’m saying is that stigma is a real force in the world and causes untold misery and harm to people like me and my fellow Invisible Illness sufferers and friends. I’m saying that in order to fight it we need better education and health care, and laws to protect us and society from people who hate and people who kill regardless of their motives or reasons. It’s all connected and there are no simple answers to any of this. I’m not pretending there are.

But I believe any intelligent society, which I believe this is, is capable of identifying workable solutions to these kinds of problems. In fact it’s a mark of a reasonable society that we Do find solutions to these kinds of problems. But I don’t believe we can leave it in the hands of the politicians alone and I think each of us has to take a stand and do what we can in our own lives and working together to create a decent society. It’s hard work and it can be dangerous but it’s required of good citizens. I hope I’m one of them and I hope you are too.

Fighting Stigma Together,

Steve

Risking Safety

Waterfall and Path

I just read a great post on the “2B Aware” site that posits an interesting Question. As the writer, Snarky Faith suggests: “There are two basic needs that we are hardwired for in life: security and significance.  We want to feel safe and, at the same time, know our life truly matters. The only problem is you can’t have it both ways.” Snarky went on to talk about this in detail and it made me take a look at my own life and how this concept has played itself out over time.

I’ve always been one who has chosen to take a path of risk, of taking chances, to try to make something significant of my life and do things that I thought of as important to help humanity and the world of Nature. Whether it was planting beautiful gardens or managing a food co-op, producing mind changing music and events or providing a safe place in a non profit educational center for people to come together to express their ideas and change the world. I’ve taken chances and it’s been a great life.

But when I was 45, some 17 years ago now, I was stricken with an episode of Bipolar Disorder and a physical breakdown that so drastically changed my life that it has never been the same since. I haven’t been able to work a job since then and have been on disability for this whole time. It’s changed my whole world and it has changed how I view the concepts of risk and safety.

I used to feel safe even when I took risks because I believed that I was invincible. It’s a part of that hypomania that so often goes along with those of us who are Bipolar II and I was no exception. I felt I could accomplish whatever I set my mind to do and I usually succeeded in it. I was changing the world and that’s what mattered to me and I was mostly content with that choice. I took extreme risks with myself and my well being and with my security most of all.

When I had the breakdown and things changed I had to make my safety and security the top priority. I had to take care of myself for a change. Put myself first instead of everyone else. I had to look at what I’d done to my health and my psyche by being so out there on the front lines of the struggle to make a better world and I saw that it cost me a lot. I realized I could no longer afford the cost. I was broke and living on a shoe string, tho I’d always done that, but this was extreme and I had to make decisions differently than I ever had to before.

I’d always been able to create a job for myself doing something worthwhile, or else joining with others who were, such as with the food co-op or the collective cafe where we provided good food for pe0ple. Same with the cultural collective where we presented gay mens music that had political content to it in the early 80’s, a time when most of gay culture was vapid and into who looked the best and who was sleeping with whom. I tried to offer different options for people to grow and change to become more fully themselves.

But when I couldn’t count on myself to be able to create work for myself anymore, and I certainly couldn’t work for anybody else because I was so messed up in my head and my body so trashed as well, I found that I longed for safety and security like I never knew I needed. I needed a change and it took a long time to create it in my life again. The change I needed was Love and I finally found it after much searching and longing.

I’ve changed a lot in the years since then and am now in a secure relationship. This has made a huge difference to me in terms of both my financial security and my emotional stability. I am loved and it’s not that I wasn’t before. I was. But this is different. This is a lifetime partnership that gives me a stability I’ve always lacked. I’ve come close to it in the past but it never was quite right for me or my then partner. Now I have something where I can feel safe for the first time in my life since I left home  as a youth.

I’m not taking risks like I used to. I’ve discovered that living with so many illnesses is a constant form of risk taking every minute of my existence. Like the Bipolar disorder or the chronic pain as well as all the other things I have to deal with it’s all overwhelming to me and it’s all I can do to stay a somewhat stable course most of the time even now. To take a risk with that stability just seems plain dumb. I absolutely Have to love myself or I’ll die.

But I feel like I’ve abandoned my calling in some ways. I still talk to people and I try to say things that are helpful in these blogs and in my life. I write letters for organizations I believe in and do a little activist work in that way. But it’s nothing compared to who I used to be. I just can’t do that anymore and I have to say I miss it.

I haven’t abandoned the struggle but I have to approach it in a different manner and put myself first, something I see that people who are involved in social change often don’t know how to do, as I’ve seen firsthand in many years in the trenches. The rate of burn out in social activists is high, and I’m just one casualty of it.

So what’s the answer to the questions that I began with in this post?  Do we have to choose security or significance or does the indecision make us melancholy and depressed as the writer of the article suggested.? I think you can have both. I think there’s a way to love yourself and your life and still to love the world and be engaged in it and take what risks are appropriate. The thing is to learn what battles are the ones to fight and which are the ones to let be. At least that’s how I see it.

What do you think about this quandary? How do you live your life? Have you made a choice towards one or the other or do you try to embrace both as I do, and are you happy at it whatever your choice? As you can tell this has been and is still a struggle for me and I suspect it is for many of you too. I’d love to hear your thoughts on the matter if you’d be willing to share them.

May you find Peace, whatever your choice,

Steve

PS. Thanks again to the “2BAware” site for posting this article that got me off on this post. Read it. It’s a great site. The article is called “The Most Important Decision  You Can Make”. http://www.2baware.net/self-awareness/the-most-important-decision/#more-2914

 

Despair Takes a Holiday

Breaking Clouds

Well I knew it was bound to happen. I knew that if I just waited it out I’d feel better in awhile. Not that I’m not still depressed. I am. But I feel like I’m in a strange sort of bipolar mixed state, where I’m depressed but also a bit hypomanic and so I was able to do things like go for a walk with my partner earlier today in the brief Seattle winter sunshine, and to go to an appointment with my Oncologist later on.

He told me my PSA is way down and I still have no trace of the prostate cancer that attacked me a couple of years ago and caused me to undergo Brachytherapy surgery, the kind where they insert radioactive pellets inside your prostate. We used to joke that I glowed at night and it made certain things easier.. ahem…. Geez, if I can joke like that I Must be better eh?

Anyway, in looking at some things in my past, I’m clearly doing pretty OK now. I’m still dealing with some severe problems, and I’m still upset about them. I don’t like it when things get me down like this tho and I had to first just give in to them and let them drag me to the bottom of the Pit of Despair. Then I wallowed around down there for whatever length of time I seemed to need to and then I started to come back out again, like now, finally.

That began yesterday and I’ll credit my counselor for at least a good part of it. It helps to have someone who’s known you for years as a therapist and can tell you that you’re in a depression and not thinking clearly. I knew I wasn’t OK, but I couldn’t really grasp it and hold onto it till we talked and I got the objective observation that I was over magnifying my problems as I usually do when I’m in that state. So, thanks to him and to good counselors everywhere who help us out when we’re down.

I also talked to my partner about my troubles and the issue that has me most in despair – my sexual dysfunctioning. He can’t do anything about it and neither can I but it helps to have someone to voice things to when you’re struggling with an issue that affects you both, even if it’s a problem with my body. He doesn’t judge me for it and is simply there as I need him to be and it helps so much.

I’m lucky to have a lover in my life who is so unflappable even if it galls me sometimes when he doesn’t react the way I want him to, like I do in other words….<grin> He’s a blessing in my life and I’ll keep saying it as long as we’re alive and together, hopefully forever.

They say Life is Uncertain and that you should eat dessert first. Well I haven’t been eating much dessert but I have had a few holiday cookies. And I’m letting the spirit of the season infect me as much as I can. I’m just not up to writing holiday cards yet, but I will be in time. But I have worked at decorating the house and yard with lights for the Solstice, as you can see on my other blog in my most recent post called “A Garden Of Lights”. How can you stay depressed and write a post that glowing, literally?

I’m lucky to have 2 blogs going at once. I decided when I started them that I’d always be positive in my Gardening blog and I have been. I leave my troubles to this space where I purposefully use it as a place to talk about the hard things in my life. Kinda Bipolar I guess but it works for me.

This blog is so helpful to me, to be able to share my thoughts with the world, whether anyone reads it or not, tho I do so appreciate the readers and the feedback they give, believe me. Talking about my problems has always been one of the ways I do best when I’m in a stew and this blog allows me to do that. So thanks for reading it.

I’ve also done some conscious work on myself in the last few days, and I’ve allowed things to just shift of their own accord, in the Way of the Spirit of Life. Time does heal me when I allow it to. My motto of “Give it Time” is true for me and has been for years. I just need to remember it and not get all twisted up in my angst and anger at my problems.

Tho actually anger can be a good sign I think, compared to bleak despair and depression. Anger has energy to it and helps me shift out of things faster, as long as it’s appropriate and not directed at the wrong targets. I’m careful to not just vent, a lesson I learned from a boyfriend years ago who did that to me. I thank him for the lesson but I don’t allow people to vent at me anymore. It’s damaging and I don’t do it to others if I can help myself, and I usually can.

So even tho I’m still unhappy and having to struggle to maintain a decent state of mind, I do seem to be taking a brief holiday from my despair and I’m grateful for that. It’s good to have breaks in the drudgery. Who knows where I’ll be at tomorrow after all? The one constant is Change and I know that one all too well. I’m glad I’ve changed a bit recently and just hope that it stays with me for awhile. I hope the same for those of you who are struggling with your own demons right now too. Hang in there and give it some time. It’ll change….

In a Holiday Spirit,

Steve

Coming Out of the Closet

The Proverbial Closet

When I say that what do you think of? If you’re like most people you’ll think of someone who is gay and is coming out about that. And it’s true that I’m gay and I’ve talked about it some already here on this blog, especially in About Naked Nerves, but elsewhere as well. I’m doing it again here. It’s a constant process, coming out is. It’s not something you just do once and it’s over with. You do it everyday in many ways whenever you’re with someone who doesn’t know and you want them to. Or when they find out somehow or guess. But most people don’t see me as gay unless I want them to. I don’t act in a particular way or look or dress in a specifically Gay Way, whatever that might be. That’s why I’ve included it in my list of Invisible conditions I live with.

Coming out isn’t something that just gay people do. It’s something that we all do. We all have to come out at some point about who we are in this life. About what moves us and makes us tick. What we share with others and what we don’t. Especially for those of us who have Invisible Illnesses it can be a challenge to come out. Is it something that you want people to know about or not? It’s always a question for anyone to come out as to whether or not you want them to know the real you. After all what you’re talking about might impact a career or your job, or a relationship or a possibility in your life for happiness. You have to really think about it and decide what to do.

When you have an Invisible Illness you are constantly put in this position about whether or not to come out.  On the one hand you may want people to know what you live with, for a variety of reasons. Sometimes it’s to gain support or understanding. Sometimes it’s to gain an adjustment at work or in school. Sometimes it’s so you can have a more real relationship with someone. With a partner or spouse. And sometimes it’s in our best interests to come out to let people know what we deal with all the time.

Sometimes it works against you  and you don’t really want people to know. It could cost you a job or a promotion if they knew. And sometimes you don’t Want people to know you’re sick because of the pity you might get or the “help” people often mistakenly offer that we don’t want or need. Or it could stop a relationship cold. I’ve had people tell me that when they found out I was Bipolar that they didn’t want to have anything more to do with me anymore. It’s hard sometimes. I’ve lost friends because I’ve come out and been judged unfairly about who I am. It hasn’t always worked in my favor, whether its about being gay or being sick. It’s a tough call to make.

I’m going to suggest that it’s a good thing to come out when you can. I’m not being absolute about it. But consider that it’s the very act of coming out that helps us gain support for our causes and for our illnesses. It’s been true for gay people that coming out has gained us greater visibility and this changes societies mores. This is true for mental illness too tho that’s a really tricky one. So are many other illnesses. But again if people know that you have a condition or are a certain way and they know you then there’s a good chance that they’ll think about that condition with favor and not condemnation. You certainly find out who your friends are, and aren’t.  And you may help change the world if you do.

I’ll agree it’s not for everyone. I know a lot of closeted gay people and people with Bipolar who just don’t share it with anyone. I don’t fault any of these people. It’s an Individual choice and the first rule about coming out is that you Never come out for someone else! You let them choose and I’m not pushing you to do something that’s against your will. It’s up to you.

I am asking you to think about it. This is how the world changes and how morals and attitudes and mores change in our societies. Remember about the squeaky wheel getting the grease. If we want people to understand us it’s ultimately up to us to educate them about who we really are. It can make or break a movement, which is how I see things here. “The personal is political” is an old saying and it’s true. How we act in our lives affects our society and changes our world. Is it time to change yours?

Good luck with your decision,

Steve

Feeling Threatened

I used to feel on top of the world. I had an attitude about me when I’d walk thru the world that basically said something like “Don’t Mess With Me”. Not in a hard core punky sort of way, but just in that way of being strong in myself, of having a good self image and self esteem. I didn’t take guff from people and I stood up for myself as well as I could given that I’m not a big guy or a tough or trained in Martial Arts or anything like that. In fact I’ve never even been in a fight in my life except as kids. So when I had a breakdown and found that I was disabled I also found that my self image had shifted somewhat.

Speaking in part here as a gay man but more as one who is disabled, I feel like I’m now a target of people who would do me harm. I can’t run away anymore, my favorite tactic when I couldn’t stand and fight, with words I mean, not physically. I can still hold my own with words pretty much but then again not when I’m in a depression. I can’t do it then. I’ve tried and failed miserably. I’ve had people trash me when I was depressed and haven’t been able to fight back and defend myself and know that I didn’t deserve it. In fact often I’ve felt that I Must have deserved in the nature of my illness.

I also grew up as a kid with severe asthma and was the subject of some bullying when I was a child. Nothing major but enough to let me know even then that I had to develop my wits to survive. And I did. As I said I had an attitude and it carried me thru. But that attitude isn’t around a lot of the time now. I can still call it up when I’m feeling particularly good and not in too much psychic or physical pain. But I Always know that in fact I’m Not OK anymore when it comes to protecting myself. I know attitudes about being gay have changed over the years but we’re still vulnerable to hate crimes everyday and people who are homeless or look like they’re not on top of it are considered easy prey by muggers and those who would do us harm.

So what do you do with this? I’m asking because I haven’t figured this one out yet. I try to stay calm and think positive thoughts and believe in myself as I used to but I find it doesn’t always work. Sometimes it’s my mind that betrays me as I’ve said. But mostly it’s my body that’s the culprit and I hate to think of it as a culprit of anything. But the fact remains that I’m now prey and it’s a disturbing feeling. How do You cope with it? Do you take classes in how to defend yourself? I’ve done that but I don’t think I can even do the moves I learned anymore. It takes too much Umph!.  I have to rely on staying out of dangerous places as much as I can and try my best to stay as strong as I’m able to do. I’d really like some feedback on this if you feel the same way I do. It’d help me and maybe others here as well.

Thanks.

Steve