Help fighting isolation for a shut-in.

January 27, 2009 8:37 AM

Help fighting isolation for a shut-in.

I'll try to minimize the salient points of my life story: along with being autistic and bipolar, after my oldest sister was brutally murdered and I was raped as a child (I'm male), I've spent the vast majority of my adult life as a shut-in. It was, and often still is, exhaustively terrifying simply to step out the front door or (especially) be in any sort of crowd -- I can only think to describe the feeling like skydiving without a parachute.

I've worked through it over the years to various degrees, getting to the point -- in my early thirties -- when I could finally move away from my parents and start making a new life for myself overseas with an old friend online who would become my husband. Even once I moved away and (for the first time in my life) had this incredible loving relationship, I still couldn't get my ass out the door more days than not. But I was genuinely getting there; he made me feel at ease with the world as I never had before, and for the first time (with his help) I'd started getting some local friends. I've been online in one form or another since Reagan was president, but outside my immediate family, I'd never had *any* real, in-person lasting relationships of any sort, friendships or otherwise... partly because the few people I've connected with online have a nasty habit of being hundreds of miles away, but mostly because I couldn't get out in the world to find them.

The thing is, in retrospect, I never really missed it beforehand -- simply because I didn't know *what* I was missing. Before, I couldn't feel any real anguish over never (with flawed, fleeting exceptions) knowing what it was like to have other flesh-and-blood human beings around me that *wanted* me there, that actually wanted my conversation and company, let alone intimacy. But I found out soon enough when, after just over a year -- and after going out with my husband and my new friends was really starting to feel normal, when it wasn't a major event for me anymore just to feel sun on my skin -- I woke up to find my husband dead, killed by a seizure in his sleep. (He was epileptic with MS.) Legal and financial reasons prevented me from staying overseas with his family (who loved me and wanted to take me in), so I flew back to the room I'd spent most of my life in and psychologically bolted it shut a thousand times tighter than before... reinforced when I got to watch cancer eat my sister away less than a year after my husband's death. (The only person I have left is my mother, and she's been very ill herself over the past several years.) I became a massive sleeping-pill addict, to boot; in the past couple of years, not only have entire months gone by when I didn't see the sun, entire weeks have gone by when I've only even left my bed to eat and use the bathroom. I used to be a highly creative, productive individual; but now all I look forward to is going back to sleep, and seeing their bruised and broken and hollowed-out faces so clearly, so often over and over, the way I saw them for the last time, that if I didn't keep photos of them around me I'd have forgotten by now what they really looked like.

I know all this must look like a giant plea for sympathy/pity, but I'm honestly seeking the opposite: I *want* a psychological kick in the ass, as it were. I want to be better than this -- better than the grief, the self-pity, the fear, the sheer patheticness of it all. For all the shit I've gone through when I *was* part of the outside world (the above is just a few greatest hits from the box set), I am still madly in love with the place and the people in it, as strange and stupefying and deeply scary and profoundly beautiful as they, we, all are. I still want to fight, even though I have nothing left to fight for. I'm tired of being a few extra valium away from giving my mother one more heartbreak in her own wounded life. Most of all, I know my husband and my sisters would want and need me back out there just as much as whatever's left in me that isn't yet completely given over to self-paralyzing fatigue, grief, cowardice. I know now what I've been missing all along -- and I want it back.

Is there anyone else here that's had to overcome severe isolation? How do I walk out my front door without my bare sidewalk feeling like walking into rush hour on the freeway? How can I get back into the presence of strangers for more than five minutes without it being sheer suffocation? How do I keep moving when every day, a little more of me aches to keep still? How do I shape the fuck up and *live* again? How did you do it, if you had to?

Sorry for all the pathetic incoherent rambling... just thought i've got nothing to lose.

posted by anonymous to human relations (19 comments total)

You need a lot of help. You have been through so so so much, it's not surprising that it overwhelms you. Cling tightly onto that feeling of being madly in love with the world.
posted by mippy at 8:46 AM on January 27

Step out the front door. Take a deep breath. Then go back inside.

Tomorrow, make it two steps out the door.

Next week, go get a paper or a coffee down the block.

Baby steps, man, baby steps. Seems that the *shock* of a kick in the pants isn't going to cut it for you.
posted by notsnot at 8:50 AM on January 27 [6 favorites]

I am not sure what you need to feel ok, but judging from what you wrote you are not pathetic or incoherent. Not even close.
posted by milarepa at 9:11 AM on January 27

This is going to sound so trite but: once you're at that point*, find a volunteer commitment that feels right. It only has to be for an hour or two a week, if that. If you find the right organization, you'll work with gentle, fun, non-prying folks who genuinely want to take a stand (however humble) against everything that is ugly and broken about how the world treats its weakest. You'll have a place you're supposed to be once a week, where faces will eventually brighten to see you. You'll feel like you're contributing, and those creative juices may start flowing again.

*But until you get to that point: graduated exposure. (Like notsnot describes above.)

Feel free to memail.
posted by availablelight at 9:14 AM on January 27

If you are currently engaged in mental health treatment, ask you provider about case management services. If you can get an Intensive Case Manager (ICM), part of their job will be to help you reengage with the community. This can include anything from accompanying you to doctor appointments and any other stressful obligation (court dates, for example) to community based activities like going to lunch, going for a walk in the park, the movies, etc.
posted by The Straightener at 9:30 AM on January 27

Can you have someone come to you? I'm not sure who that might be - a nearby online friend, a church volunteer, a social worker? Have a flesh-and-blood person in your residence, who can then gently encourage you outside - maybe just for a drive, maybe to the corner cafe. Then you won't be facing this alone.

I've dealt with agoraphobia before, but I haven't been through 1/100 of what you have. Basically, I took baby steps and I learned that there's nothing "out there" that can hurt me - all the hurting is done "in here."

My sincere best wishes.
posted by desjardins at 9:44 AM on January 27

First: we are not your doctors, and most of us are not medical professionals, period. You need more help than you can get from AskMe comments.

Something you can do immediately: I don't own any books on the topic so cannot offer specific recommendations, but you can start by searching Amazon.com for books on agoraphobia and social anxiety. Look for books offering cognitive behavioral therapy techniques. If you cannot afford to order books online, many local libraries offer delivery programs for shut-ins.

Something for you to start working on: There are mental health professionals who specialize in social anxiety disorders and agoraphobia. Many of them will come to your home for the first several sessions if needed because they realize that it's very difficult to treat someone who is unable to leave the house.

You don't say what your health insurance or financial situation is or where you are located geographically. If you give a little more information, we may be able to help you figure out how to get library book deliveries; whether you qualify for local mental health assistance or financial help that will enable you to pay for mental health services; how best to reach a psychiatrist or psychologist who can begin to help you as soon as possible.

The standard treatment for the type of health issue you are having is usually cognitive behavioral therapy. Distilled, it amounts to what notsnot described above, but many of us who have been in situations similar to yours recognize that there is a big difference between being told to just open the front door and take one step outside, and having experienced help who can get you functioning back in the outside world as soon as possible.

That said, if you can do what notsnot suggested, that's a good first step. Even opening the front or back door and standing on the step, or on your balcony or patio, is a good start.

Talk to us and tell us a little more. Again, we are not your doctors and almost none of us are doctors, period, but we might be able to help you get the direct help you need.
posted by jeeves at 9:48 AM on January 27 [1 favorite]

By the way. I made the mistake of assuming that you have no local contacts, friends, acquaintances, etc. whom you could call to ask for help in getting you out the door, as desjardins suggested. If you do have some, get in touch with them. I don't know how long it's been since you've been in contact with them, but consider calling your husband's family as well just to stay in touch, even if they're overseas.

This may not be an option you like: Many church congregations have volunteers whose job is to help shut-ins remain functioning members of the church. Usually that means taking recordings of services to them or setting up things in their home to allow them to sit in or listen in live; sometimes it means finding a way to allow them to take communion at home; sometimes it means getting active help to physically get them to church services, prayer suppers, meetings and the like. Monasteries and other intentional religious communities sometimes offer similar help. If you are stuck for all other avenues, and even if you're not religious, do not disregard the option of calling around and asking them to help you find a doctor, get fresh groceries, or just have someone to stop by and visit you. It's not an "official" means of help, but very often it is out there.
posted by jeeves at 10:03 AM on January 27

Also, consider calling your local LGBT center, if you have one in your area. There are volunteers who visit people with AIDS; whether or not you have it, they might be able to visit you, or refer you to someone who can.

Also also, old people can be the least threatening strangers, so consider going the opposite route and visiting elderly shut-ins. They obviously can't harm you physically, they'll do most of the talking, they won't care if you're socially awkward, plus they'll be really, really appreciative of your presence.
posted by desjardins at 10:14 AM on January 27

Though you are anonymous here, I recognize you as a longtime member of our community and a longtime member of our internet community. I was heartbroken when I read of your husband's death and have wondered over the years how you were doing. Though you don't mention it here, I know you have a true gift for finding beauty in the world, and that you have in the past used that gift to help break through the isolation and fear of interacting with the world. I hope you can find your way to do that again. I'm glad you reached out here.
posted by judith at 10:21 AM on January 27 [1 favorite]

There are also peer support networks, peer specialists, and recovery clubhouses for people with mental illness. Maybe try the Depression and Bipolar Support Alliance to find resources near you. Or, again, tell your mental health treatment provider that you need more support in the community and they will point you in the right direction.
posted by The Straightener at 10:30 AM on January 27

2nding the "visit the elderly" advice.

Also, if you're anywhere near Seattle I'd love to hang out with you.
posted by You Can't Tip a Buick at 10:39 AM on January 27

Others have more constructive advice, but I'd like to second what judith said, having recognized your story as well. I hope that you can find the tools you need to reclaim your life.
posted by stefnet at 11:40 AM on January 27

Thirding what judith said - your work has touched me and pushed me out into the world before, and I've almost made contact to say so several times, so apologies for only doing it here and now.

I know the feeling of bolting oneself into isolation (although not having been through trials remotely as difficult), and have a constant fear of ending up back there and away from the world for good. This isn't much and I really hope it's not stupid to write it, but three things that helped me:

- Drawing on people who are offering support. Even if they weren't my closest friends, even if it was them taking me for a walk where I felt I could turn back any time or it was just them coming over to drink tea and talk while I sat there feeling like my heart was going to beat through my chest. Do you have friends or acquaintances who can respect your boundaries, or have experience working with people who have similar mental health issues? Elderly neighbours or volunteering sounds like a really good suggestion if it is possible. Or, if you reach a point of feeling stronger and can make the choice financially, moving to where you do have friends - even a couple of them.

- Exercise. I'm not trying to be simplistic or condescending in the least, but I know that when I can do it, my physical energy and mental state change. I wish I had really known this on days when putting shoes on seemed like further than I could go.

- That beauty you still know in the world? Engaging with it as much as you can. Risking acting on a whim to go out and see it or engage with it, when you can. Small, simple projects that you can complete, just the bits that bring you joy - tiny little bits of joy that might not change anything much but buoy up the next days a little bit. If you know anyone you could do this with, all the better.

I really wish you all the best in this, and I hope you find the support or spark that can help you fight it. I'm being deliberately vague about my own situation and am not sure it's useful to even mention it, but if you ever want to talk or anything, email or MeMail me.
posted by carbide at 12:13 PM on January 27

Make it your goal to, by the end of the week, say hello to at least one person. You don't even have to talk.
posted by kldickson at 1:35 PM on January 27

What do you care about in the outside world?

What are your passions, your talents, your values, your beliefs? Who are you? What do you like to do?

Start there--try to do something that has to do with something you're into. It doesn't matter if it's a knitting circle, a writers' group, a Star Trek convention, bird watchers group, a class in beginner Italian---anything.

You're greater than the sum of your traumas, and your bucket of trauma isn't what you have to offer people -- that's part of it, but you're also composed of all of these other pieces. Don't feel like you have to put on your big suit of Anonymous armor and carry on in the world -- you can put on your lightweight suit of 'I'd like to learn Unix' and proceed to do that, and your connections to others will be formed by these smaller parts of you. Later on, maybe you'll find some people to be more close to, to have greater intimacy with, but you don't have to jump into all of this all at once. Little steps, and focusing less on 'getting out the door' than on 'I simply must proceed to the community college to learn woodworking'.

So: focus off you, focus onto little goals.

And yeah, probably a therapist could give you the encouragement and support you need on a regular basis.
posted by A Terrible Llama at 2:54 PM on January 27 [1 favorite]

Dear anonymous,

You may not want pity, but let me offer you at least my empathy. I'm no professional, but I think losing just one sibling would be enough to derail most people to one degree or another. I lost my brother first to schizophrenia, which totally eradicated his erstwhile personality, and then, after he struggled to gain some perspective on his condition and to overcome his extreme fears of the outside world, he died one day, walking out of a bank and a few steps away from his doctor's appointment, from a pulmonary embolism. Fighting to help my brother and then losing him, this alone destroyed me, mostly because he was so forlorn and beset with devils and yet wanted so much to return to the world. Your anxieties are a not unexpected effect of the many and deep traumas you've endured, and yet they are not what strikes me the most. It is your eloquence and grace in the face of your difficulties, which, if you'll forgive me, remind me so much of my brother's. All I can tell you is to struggle on, heeding the excellent advice this community has offered (seek out old friends for support and interests beyond yourself, particularly artistic and philanthropic, exercise, seek professional cognitive-behavioural help), and beyond that, I would say check out this book:

_The Empty Room: Understanding Sibling Loss_ by Elizabeth DeVita Raeburn

This is hardly going to solve all problems, but if you are anything like me and just about every case study in this book, the emotional effects of losing a sibling, never mind two siblings and everything else on top of it, have had a profound and lasting effect on you.

I also think you need to be told again what an articulate, compelling writer you are. I am deeply affected by your story--part of this is in the substance but it is also in the telling. I have known some people who have suffered from agoraphobia and in many cases their self-esteem figured into their troubles. If this sounds familiar, you can look at your writing skill as a tremendous asset to offset any insecurity. I am totally down with A Terrible Llama--who gives a fig about the outside world insofar as it can judge or harm you. No way, ultimately, unless you let it. Begin to look at the world as something for you to enjoy, and something that you contribute to meaningfully, as you so clearly do. For heaven's sake, your post is flagged as a favourite!

Lastly, bless you for fighting on. I think you are much more courageous than you give yourself credit for, and I suspect you are going to get beyond this, too. If you feel like talking, drop me a line.
posted by sokola at 8:55 PM on January 27 [1 favorite]

Create a list of safe havens -- places you have visited which are non-threatening, enjoyable, healing, relaxing, and interesting. These might be bookstores, coffeehouses, spas, museums, art galleries, libraries, and outside vistas. (Note: if you live near luxury hotels, you can sit in their lobbies or restaurants, enjoy tea, and, for a few hours, visualize yourself on a pampered vacation).

Set goals to visit a safe haven site every few days. Stay only as long as you are comfortable. At first, perhaps avoid places that are noisy, crowded, and visually over-stimulating. Keep a log of your experiences, noting how you felt, what you liked, what might have been scary, how you'd improve the visit, etc.

You may find that, over time, you'll grow comfortable visiting these safe havens, and can eventually expand your list.

Make a second list of "safe acquaintances" -- people who are consistently kind to you when you encounter them. These might include merchants, waiters, neighbors, receptionists, and helping professionals. Find ways to visit them periodically for brief exchanges.

Take up a hobby that requires in-person lessons -- e.g., oil painting, a musical instrument, or one-on-one language instruction. Develop a bond with your instructor. If you can handle being amongst small groups of people, enroll in courses.

IANAT, but have you ever been told you might be struggling with Post Traumatic Stress Disorder? If a clinician has diagnosed you with this, you might also benefit from joining a PTSD support group.

You are a brave soul. Know that many who read your words care deeply and wish you well.
posted by terranova at 11:13 PM on January 27

Get a dog.

Seriously, something that relies on you and requires being fed and groomed and taken out for walks. Focusing on its needs, you'll less obsessively focus on yourself.
posted by orthogonality at 7:52 AM on February 4