OT-- Help needed

[MagnusTrask]

I'll make this short since I'm in bad shape medically.  I have a severely reactive system that can't handle light or many, many chemicals, mainly man-made ones.  It's basically a matter of being allergic to the world.

I've been told I have to leave my apartment after 15 years, because they don't want tenants who get assistance from the state with rent.  I'm too sick and limited to do the work involved in moving or even looking for a place.  Travel and going into daylight and reading anything but very blown up print (and only briefly) is damaging to me.  I'm too generally sick for anything but lying or sitting almost all the time.

I'm between Chicago and Milwaukee.  Gov't org's aren't any help, nor regular charity org's because the condition is so unusual and there's no way of gathering evidence that proves the symptoms. 

I can't even hold in my head all the stuff I'm supposed to do, can't do paperwork because of eyes, can't even be up usually.  Can't go out to look at places.  Can't even pack.  It's very hard to explain the symptoms but it took me a YEAR to get halfway packed to be ready for a move.  I had to stop.

I have several months.  They'll go be fast.  I'm thinking of some sort of "networking", where perhaps you might know someone, who knows someone, who knows someone in my general area, who might be good enough to step in and help.  This is a major extraordinary sort of help.  I only see it happening through personal contacts my internet friends might have.  I don't know many people online.  It's too excruating on the eyes to do much online.  I tried FB but people just shrug and say sorry.

The nightmare scenario coming next year is my being thrown out on the street, into DAYLIGHT, with no access to the completely darkened room that I need every day.  Light basically semi-electrocutes me.  It's horrible.  Ordinary homelessness would be a picnic by comparison.  Torture.

Church groups... I have yet to make those calls.  I'm horrible on the phone.  I go blank and sound like a nut, because the symptoms are so severe.  I'm not religious.  I'm not a sweet grandmother, not a case that warms the heart.  I can walk, my limbs work, so my severe disability does not show.  My experiences with churches have been so judgmental that I dread putting myself through calls I probably am in no shape to make anyway.

embryorm@earthtones.com

Sending me a PM on this forum may work, but I know I can't respond due to some quirk of my computer or the site.  I have some trouble with e-mail too but it's at least usable.  I can give you a phone number.

Please see if you can figure out some way to help.  It may not seem possible at first, but don't give up on this too soon, PLEASE.  That sort of "networking" might work even if no one you know is near me.

This is embarrassing.  I wouldn't ask for help if it weren't needed.  Thanks for listening.  I couldn't make it short, sorry.

[Josette]

Magnus, I'm so sorry to hear all of this.  Unfortunately, I don't know of anything that would be of help to you.

A couple of years ago, after my aunt died, I was all alone and had to figure out how to clean out the whole place and pack to move, after the problems of finding a place.  I couldn't believe I did it all, but that's without all of the additional problems you listed.

I don't know anyone in that area, nor have any suggestions, but I'm certainly wishing you the best.  I hope someone can come up with a solution for you.

[Gerard]

Magnus, are you sure that you can be thrown out of your apartment because the owners don't want those who receive public assistance for housing?  That sounds like discrimination to me and very illegal.

Gerard

[MagnusTrask]

Moderator-- PLEASE change "candle" in the 1st paragraph to "can't handle".  It changes the whole meaning of the post.  The extreme light sensitivity is the main thing.

Josette-- I didn't communicate.  I already know that no one here will already happen to know of a way to get me help.  So what I'm suggesting is "networking"... putting word out about this to any of your contacts who might then know someone else.... hoping help appears down the line somewhere.  Maybe someone you know might know someone who knows something, maybe ending up with someone local to me.  I KNOW it's a long shot.

I could try to write something.  you could use the above.  It leaves out that it's mainly a matter of eye work and going out in light to check places out since I can't.

I'm just this desperate, to ask for such an extreme long shot, so please don't give up on it so early.  Everyone has been. 

Gerard, it will be at the end of my lease period, and acn't any landlord decide not to renew a lease for any reason?

Besides, my apartment makes me very ill, so much I can't do the work to move ironically.  I can't stay here.  Being turned out is an issue because I can't move when I have to stay in a very dark room in bed most of the time.

[Uncle Roger]

This is a very troubling situation, Magnus, and I wanted to give it some thought before I responded. You've probably heard the familiar options, so let me offer a couple of ideas.
If you haven't spoken with a social worker, perhaps that would be a start. Not a state agency, at least not at the beginning. Your local hospital should have a social worker on staff who will do the necessary paperwork. Speak to your physician.
There may be an organization similar to American Cancer Society that can help people with your specific condition. They would be familiar with what situation entails and could advise you on what can be done.
Contact your state representative/senator and explain what's going on. They can often cut through red tape and get things done.
Have you looked into senior housing/assisted living? You don't have to be 65 to qualify. Your disability should be more than enough.
I hope that this gives you a couple of ideas. If I think of anything else, I'll post it.

[Josette]

Magnus, are you able to get out and about at all?  I would think that some apartment searching could be done after dark.

I  have very few contacts, but from the things that come in my Facebook feed from them, it seems that some have a lot of contacts, so I posted a brief summary of the situation and then copied your post.  I thought that upon seeing it, someone would share it and then all of their contacts would have it.  But so far, no one seems to have seen it or reacted to it.

[MagnusTrask]

thanks rog, josette.  I'm on the Section 8 program, paying 2/3 of my rent.  I'd have a friend to help with paperwork, IF he were right here to get it done fast and sent off fast.  Speed and keeping at the search every day are big problems because I have to spend huge lengths of time recovering in the pitch black room I need to be in much of the time. 

[Josette]

I asked the social worker at my apartment building, thinking she might have ideas of groups that could help.  But, she said she would need more specifics.  Between Chicago and Milwaukee is a big area.  If she had a more specific location she could look online.  She also said that if the doctor wrote something, even if it's "no diagnosis" but described the situation, perhaps that would help.

[MagnusTrask]

Organizations of any kind will help only in the specific ways they were set up to help with from my experience.  This is such an oddball situation they'll just say "We don't do that."  I thought it would have to be a matter of individuals contacting other individuals they know, friends or contacts etc..

I'm so sick all I can do is stumble in and out of bed and even thinking about this scares me more than I can take. 

I need a "manager", advocate, as well as the looking.  Reaction to the red stuff in the bathroom from ceiling leak making me not have brain function.

[MagnusTrask]

I'm in Zion IL.  I'm on Social Security and SSI but a very low amount.  Social workers I've heard are a branch of psychotherapy, not really what we tend to think of them as.   Church groups lose interest if you're not religious, judgmental.  I sound awful on phone.

[Josette]

I'm not sure how Facebook works, but when my "friends" (quotes because it's mostly people I know slightly, not really friends) not only post something, but "like" someone else's, it appears in my newsfeed.  So, I assume that if I post something, they see it.

There's one person who will post about a missing child, for example.  So, I thought she, and perhaps some of the others, upon seeing this, would share it and then all of their contacts would see it too.  But there was NO reaction at all.  Very frustrating!

[Josette]

I told the social worker the location.  She was busy, but said she would check and get back to me.  I also talked to the building’s manager to see if she had any suggestion.

She said there is a difference between HUD subsidized housing and a private landlord.  There is a Section 504 that you have to get “reasonable accommodation.”  That means you can have doctor write 1) that you are disabled (don’t need a diagnosis, just that you are disabled) and 2) specifics of what is needed for you to have a quality household, such as low lighting or absence of certain chemicals.  For example, if you have to have no carpeting, or whatever specific needs you have.

She also said that some places give priority to the homeless or those about to be homeless, defined as not having or about to not have a permanent address.

She suggested contacting your local HUD office and the State Housing Finance Agency.

As to getting personal assistance to help with all you need to have done, she suggested contacting the Department of Aging.

I don’t see why the church option doesn’t work for you.  When I was looking for a place, and I also had a specific problem I was looking for some financial help with, someone recommended a Catholic church here.  I’m Jewish, but she never asked anything about religion.  I just explained my predicament and she was helpful.  The particular problem, fortunately, ended up disappearing (there was a “miracle” in getting this place, I’m not going to go into my story), but they ended up paying my security deposit.  I would also imagine that a church would be a good place to find individuals willing to help, where you could get a personal assistant.

[Uncle Roger]

Josette is right. Catholic Charities (which should be in the phone book) can be very helpful, whether you are Catholic or not. Salvation Army may be another option.
Things vary from state to state but the Departments of Housing and/or Aging are a good idea. Depending on your area, there may also be assistance available from the county or city. I would think that the city hall would be a place to call for local information. Not sure about the county though.

[Gerard]

Josette and Uncle Roger are head-on, Magnus.  Catholic Charities and the Salvation Army are very good at helping.  Neither cares about religion.  Contact them.

Gerard

[MagnusTrask]

I had an awful experience with Catholic Charities years ago.  The woman snapped a light on in my face, not caring about the light hypersensitivity.  She was later contempotous on the phone.  I've heard similar problems with them elsewhere.

I can't make those trips anymore.

I'm so sick I can't stand to think or talk.  Or be conscious.  It's been 35 years and I've had a thousand doors slammed in my face.  I hate to say it but after 35 years of struggle, I'm becoming helpless.