One of my readers posted the following story as a comment on my blog posting about Disaster Planning but it was so poignant I wanted it to stand on its own. This is printed with her permission, and she has asked to be anonymous.
There is another type of disaster that is in a different category than those caused by natural disasters. That is financial ruination and difficult for people with serious health handicaps.
I can speak from personal experience. Our story is similar to the stories of most working middle class Americans whose lives have drastically change due to medical catastrophe or a serious illness in oneself or the family.
We are Baha’is, and find that the Baha’is who are understandably not equipped to handle serious social/financial problems among the friends, but who also lack the knowledge to be resourceful in finding unconventional ways to be of assistance. So, I share my story with you, just to give one person’s narrative and efforts for solution.
My husband and I do work and research from the home which means we have a huge library. We also inherited lovely furniture and china. Work involves his professional consulting, my returning student’s school work and stuff, our Baha’i Books, spiritual literature, inspiring and help yourself types of books, books about illness, mental health and addiction (all related to my schoolwork).
We have made some mistakes along the way concerning our economic plight. When my husband underwent a major life changing surgery (the type that is physical to the point where everything changes: ambulation and how to do activities of daily life, etc.). I have major disabilities myself, physical and neurobiological which precludes us from working at most jobs.
Our Social Security income is not enough to live on and spouse’s business has taken a drastic downturn. Especially with his illness, like many Americans, our advice is, “Don’t get sick in America; you will lose your shirt.” Good bye house, good bye savings, good bye capabilities that non-handicapped people take for granted, good bye financial stability. Hello, depression, some bad decisions along the way, not wanting to downsize and give up comfortable lifestyle, debt. Bills dog us all the time.
We have drastically “downsized” our lifestyle, especially compared to most people, although still have some luxuries. We refuse to give up our dirt cheap wonderful health insurance, with no co-pays, not given our complex problems. Even if we applied for government poor peoples’ medical coverage which we may not even qualify for we would receive crappy care and have to pay co-pays for everything with fewer services and medications.
I have told my husband on more than one occasion that we are no longer economically sustainable. Sometimes he gets it and sometimes he doesn’t. He has profound grief and many losses due to his illness, which I believe are more devastating than mine. He is used to being boss of the house, stubborn, and understandably in a lot of fear. The resources of the Faith and 12-step programs don’t seem to be “in his vocabulary.” I have those resources but still slip into fear and worry. I also have a lousy short term memory.
I have been resourceful in getting as many free services as I can outside normal social services channels and being a part-time older student for dirt cheap opens a lot of possibilities for assistance and, believe it or not paying work! Work I can actually do, despite my many disabilities and not having worked at a paying job for several years. However, my work can be sporadic but it has helped a lot. It actually earns us money for me to be a student.
When we moved to our new town, our LSA saw our predicament. They helped us move things to a storage unit, and then to a new house when our landlord wanted to move back into the home we were renting.
Here is our part: we never adequately went through our possessions and there were a lot of things we should have thrown away and didn’t. Truthfully, we were too ill and depressed to do it, and I think I did not make certain decisions wisely. I opted for finding ways to be happy and find a new purpose in life, but that led to certain critical practical considerations being overlooked.
Now we are faced with another move, are both disabled, and are a few hundred dollars per month above the “poverty line” so we don’t qualify for most social services. My husband has dragged his feet, and obtained help from a professional disability counselor. On his suggestion, he put my husband in charge of house hunting since I was doing everything else and needed help. So we are now faced with moving again and, like before, at the last minute.
After my cancer last year, I spent hours looking for help with things like housecleaning. Several friends have been generous and have helped financially and with their free labor. Our friends, for some strange reason, have not given up on us and are still there (is God watching out after us?) For months we have had trouble paying our rent and often paying it late. We have had trouble financing mowing the lawn which our lease said we were supposed to do. We get the lawn moved by neighbors and a friend who loans us his lawnmower, a God send (He seems to be watching out after us); but that is not enough lawn care to please the landlord. He refused to renew the lease.
At one point I requested assistance from the National Assembly and they gave us a one-time grant to pay rent for a month. They had also talked to our Assembly about us and don’t know what was said in that conversation. In their letter with the grant, they advised me to focus on getting out of the financial mess and set school aside. Apparently, they did not know that school was a mental necessity for me that actually made us money and gives me a future, for the first time of better things to come. I consulted 5 of my medical professional care givers, and they all agreed that it was important for me to stay in school and that it would be bad if I quit. I have stopped most of my volunteer activities except for hosting a Ruhi class at one point and doing Baha’i teaching on my campus, with no college club! The teaching actually makes me happy and energizes me and I think it would be bad to give that up.
One member of the Assembly scolded me for not following advice of NSA. Eventually I got up the courage to write NSA with copy of letter to LSA, explaining my position.
In fairness to the LSA, I can see why they might not know how to help us. Most of them are either disabled themselves or to tapped out with family, work, and service commitments to do much of anything.
I don’t drive, so two members always make sure I get to Feast. That is a good thing.
One member accepted government poor peoples’ insurance and did lots of things to uplift herself from poverty and after several years got a part-time and then full-time job. Unfortunately, her way is not workable for us, and especially not for my husband. She has gotten good care with poor peoples’ insurance, with a very complex and difficult medical history. She has downsized and from what I can tell has more common sense and planning skills than we do.
I even went to the LSA on two occasions, asking for help. One idea was to sell things on the internet (I just don’t have the time or energy to do that; I would give away most of things first! A professional organizer was recommended to us, who would have helped us and when I talked to her seemed caring and good at her job, however, we couldn’t afford the down payment to get started. Our Disability counselor is now helping us with that stuff, and the services they can provide only go so far.
One Social Service agency that is highly recommended is purported to help people with housekeeping and other services. I have called or seen them on more than one occasion. They offered nothing too people who weren’t below the poverty line. We are in the same class as the “working poor,” who don’t get as many services as the poor people get.
I make no bones about the fact that I go to some food banks and am grateful to them. Most have great people, especially the one at the University. I see nothing wrong in talking about this as a very normal thing for people to do, as there is a lot of shame and stigma about this sort of thing.
My offers to help be of service in some way are generally turned down; I should be sensible and pay my debts first. However, per twelve step guidelines, a sensible amount of service activities is good for ones survival and especially one’s soul. One LSA member, and probably his wife, support my idea to start a College Club. The first activity is very simple; a monthly prayer meeting and making friends. I am happy with a meeting over the phone while I pray on campus. After months, I finally found another Baha’i on campus who is too busy to attend most things.
What can the LSA or even the NSA do for someone like me?
For one thing, they or community members could keep me company while I work.
They are praying for me, and one community member offered to help.
They could help me make phone calls. They wouldn’t have to do all my calls, just take some of the load off my back.
They can let everyone know that the Regional Council might have some resources (I didn’t know that until I read your post). I will be contacting them.
I am doing everything I can to help my profoundly depressed husband who is actually going to a Psychiatrist and staying on his medication. LSA members have tried to reach out to my husband, but he has not reciprocated. They have not given up on him. That is a wonderful thing. These good people need help too!
Another great thing they did: they moved a person who had cancer and no close family to a new apartment. They found an apartment for him too. They drove him to doctor’s appointments and found good medical help for him. These are all things he could not have done on his own. They invite them to see rented movies at their house. They found a beautiful apartment for him and he has even hosted a feast. So obviously these good people are doing something right.
There has to be a way, we can be helped by the same LSA but I don’t know what it is. Is it because my husband and I don’t appear to be making good decisions or have a different and incomprehensible sense of needs? Do we appear to be not letting go of our old life style or still making decisions that they don’t consider to be good ones?
If there is even an answer to dilemmas like ours, I say “bring it on.”
Perhaps the Regional Council could have a Ruhi class on how to help poor people with physical and mental limitations! Especially on helping poor people who are making what they consider to be bad choices. Also, do they know the whole story?