If someone invites you to walk through their personal Hell with them, you’d better go armed.
The tricky part is you usually have no idea what or who you are arming yourself against.
In my case, sometimes it’s my brother himself who just this week has thrown so many brick walls and dismantled metaphorical bricks in my direction that I’m vacillating between being frozen out and feeling emotionally assaulted.
Of course I realize all of this comes from his illness (and I do believe it all does-it’s all paranoid crazy thinking such as I’m trying to poison him and hate him and want him dead to inherit his furniture) yet that awareness doesn’t turn that bitter pill sweet.
The landmines you run in to in the “not crazy” part of your life are equally as blunt force and brutal sometimes though too.
Mentally ill people are not the only ones in the equation who become disenfranchised. Families and loved ones can fall right down through those cracks with them. I could write a whole blog on how this happens in the healthcare system (not a blog post, an entire blog itself) but that would just be too depressing. It is what it is. And that’s not what I’m here for.
I’m fortunate enough to have some background in the field so I can speak the language intelligently, combined with a Scorpion like persistence that I probably garner more respect and attention for my brother than most. I know that goes along as well in all kinds of health care, not just mental health.
But the mental health aspect has the added bonus of stigma that shows you things you like and loathe to see in the world around you.
As we lost Cindy at Christmas (her body was discovered Christmas Eve day 1988), that holiday is often very tricky for my family as you can imagine. Anniversaries are hard enough but top it off with a family holiday, it’s a lot.
We spent many years, frankly, just lost in the world trying to navigate without a compass much less a faint sense of True North.
My family has tried many ways to find ourselves in an environment that would both accomodate my brother and help alleviate our pain and in a grand sense of optimism, find a place of joy. And we do our best to cover it up so we’re not wearing it on our winter sleeves for the world to see. We’ve been fortunate to find this on a few occasions (thank you Pam, Jack and Ryan).
One year I had a good friend tell me she’d invite us over for Christmas Eve but “didn’t think (her) family could handle John”. That was like a double whammy on steroids.
Just recently I learned that a friend was concerned about John coming to their home for dinner as we’d been invited. When they were informed John wasn’t coming (he was really not well), this friend was concerned that I was coming without him. So I guess my only option, in this person’s mind, was to stay at home alone with John who was in a bad space in order for what? For their dinner party to not be disrupted with him even from afar? That I might carry his Schizophrenia with me to somehow infect their lovely orderly evening? That John who’s never had one trouble with the law before would suddenly burn up the house or something without me there monitoring him?
These kinds of things make an indelible impression on a person like me. If my brother had a spinal cord injury and was in a wheelchair and needed extra assistance for that reason, having a bad day, would that brother be disinvited to a holiday? A dinner party? Of course not.
It’s one thing to not know how to handle it. It’s another thing to alienate your friend, which in this case would be ME, because of your discomfort.
Now I’m getting worked up aren’t I?
Finding a way to manage this new life, with very little support such as it is and still have a tangible sense of my own life and circle is, what’s the word, well it’s it’s own field of landmines isn’t it?
I don’t know about others but for me, once I hit one explosion, then I don’t have the energy to armor myself against another. I am more apt to find a new path that at least looks clear.
I guess in a perfect world we’d like people to open their minds, understand the pressure and special needs involved here and still welcome a person like me warmly in to the circle. I’ll just say it. I feel like I deserve that.
Yet in reality, we all just want what we want. We all as humans prefer things to be comfortable. I know I do. But my family passed that gauntlet long ago. We’ve just learned a new norm with discomfort. Yet we still, generally are happy optimistic people. Go figure.
My life now is no longer the carefree easy fun party girl life it once was, not by a long shot. But I’m still fun. I promise. Most of the time anyway. That is if I’m invited.
I’m still here.
I’m realizing I need to find a way to drop my armor and find safe nests and get used to being alone even more than I already had. Or better yet, make room for those new faces who walk in smiling asking “so how is this for you?” offering a hand in understanding. I probably need some kind of support group. Well, not probably.
It’s times like tonite I wish I lived in a small town. You’re never more lonely than in a big city with no one to visit with yet you hear the neighbors across the walls of the townhouse.
Or maybe, after a long day of acute unrelenting psychosis overload, I’m just feeling sorry for myself.
I’m headed for a bath, a movie and a cozy bed.
Things will look better in the morning. They always do.
two innocents 
amazing as always Kathy. You can come to my house for dinner and bring John! I have no way of promising what my kids might say, but if you help me, I can try to educate them and prepare them first – they are kids and truly do say the darndest things. Tonight, Trevor asked me why sissy didn’t have a long peepee like he does. I explained that boys have a penis and girls have a vagina and of course, he thought that word was hilarious – it really is so silly sounding. He couldn’t quite say it right which led to lots of other funny things. Nothing like peels of laughter at bedtime. Praying for you!
I totally understand and empathize. You are a shining example to all who are similarly situated, like me and my sisters, but not comprehensively up to the “task”. Thanks for writing.
Sounds like quite a day…you have a good plan to move forward! Bath, movie and bed! Be gentle w yourself… One day at a time..xoxo kiminnm
Wow! I love the way you write. You put it all out there & that takes extreme courage & fortitude! Holding on to the armor is heavy too. It takes it’s toll on your psyche & your physical health. I know I’m not saying anything you don’t already know & feel but I do think a support group is a great idea as long as you can get some support & don’t just take on others problems:-) which would be easy for a loving, caring person like you to do. Praying for some support to come to you my friend. I know it’s hard to accept help so I’ll add that to my prayer! xoxo
Oh Kathy, I ache for you — but, remember the peace inside you — never forget — it is you, it is strong, it is real.
It sounds so trite to say “I understand”….. but I truly do. I remember overhearing someone say my brother’s condition might be contagious (cerebral palsy, in a wheelchair now). I was young, and hurt and angry. I think that was when I first learned to don my armour. It gets chinks once in a while, but somehow I manage to keep it wearable. Ocasionally I get in a funk of feeling this is impossible, but a day or two later I usually can say this, too, shall pass. Most importanly, we all need an outlet to vent our frustrations. I believe this blog is one way to do that, the good and the bad. But if truth were known—-I would like to be the world’s worst cussing screamer at times. I may not say them aloud, but I could give a sailor some competition with what goes through my mind on occasion. Poopy-headed ignoramous is about the worst I can manage aloud 🙂
Emphatic hugs coming your way.
My door is always open. I have found John to always be charming. I’m a teacher with 40 yrs experience and can handle anything! All you have to do is call and I’ll come by, or you can come over to my house to play. Being single has its challenges and blessings.
This is a test to see if I can post .
♥ Paula
it’s working! 🙂
WOOOOOOOOOOOHOOOOOOOOOOOOOOOOOO . . .
I see that I’m awaiting moderation which is a sure thing that you will see this Sweet Peony Kathy.
I’ve read your newest post (also read every one as they come to us) and I’m completely out of my element in knowing what to put here. Prayers and love seem just not enough. I went out and found a peony petal heart for you but I can’t attach it so I don’t know how to share it with you
You are Loved Kathy. It seems trite for me to say that God only gives you burdens that He knows you can carry. Sometimes He expects us to ask Him to carry us. I’m linking the poem by Mary Stevenson for you to read. I’m certain that we’ve all read it countless times but I hope that today it will lift you and lessen your heavy burden.
Love from Paula ♥ ♥ ♥
It might have helped if I hadn’t forgotten the link LOLL . . .
http://www.footprints-inthe-sand.com/index.php?page=Poem/Poem.php
Love,,
Paula ♥ ♥ ♥
thank you Paula…never can read that one too much huh?
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For You Kathy . . .
If you lived near me, my (our) door would be open to you, AND John. I pity those that feel the need to “protect” themselves from that which makes them uncomfortable about mental illness. I UNDERSTAND it…but I pity it. Stigma SUCKS! I’m sorry that YOU are subjected to it, not just John. **sigh** You know…..sometimes I think it’s worse for the immediate family than it is for the one with the illness. I trust you know what I mean. I KNOW you know what I mean. Please reach out wherever you can, and ACCEPT whatever help you can get. ASK for it. You NEED it. You DESERVE it. I hope it is better enough tomorrow to get you to the next tomorrow. ((Hug))
Thank you love. John is currently missing. I’m to a point of wishing the police would pick him up and take him back to the hospital. It’s just an unending nightmare.
Oh nooooooo. I am so sorry. I really cannot imagine what it would be like to experience all that you are going through, ALONE. Honestly, I think it is too much for you alone. Who am I to say that?? I just feel that way. Who knows….John might NEED you to let go, for at least a while. Maybe as much, or even more, than you need to for yourself. I pray for “the best” outcome. I don’t know what that is, but I believe that it will happen.