Ugh. Turns out we have to replace the entire water heater. Over $1,800 (which we can’t afford)! This seriously sucks. To make matters worse, the guy couldn’t put the new one in until today, so we had to go all day and night without any water at all (they had to shut it off entirely due to the enormous leak). The guy said he would be here around 11am to put in the new water heater and it is now 12:30 and no sign of him yet, although he says he’ll be here soon.
Due to all this I am grumpy and feeling yucky and just want to whine lol. I can’t even flush the toilet!!! I know this may seem crazy to non-autistic people, but the huge change in my daily routine has driven me freaking crazy and brought on a nasty IBS flare. God, I hope this is over soon.
This seems like a good time to remind everyone that I do have a PayPal donation button set up on my blog if anyone ever wants to send a few bucks to help out or support my blog. You can donate any amount and don’t even have to have a PayPal account of your own. You can find the button on the right side panel of my blog home page, or access it through the Support My Blog page. If you are able to help out, that is great, but if you aren’t, your kind thoughts and well wishes mean the world to me.
Yesterday I had rather a bit of a breakthrough moment. Now, to most people with healthy backgrounds and relationships, this will likely be a bit of a “duh” moment, but to people like me who were groomed to be codependent caretakers, it is an immensely important realization.
My “eureka moment” can be summed up in one sentence:
I don’t owe anyone ANYTHING, and no one owes me ANYTHING.
Of course, this does not mean that I can’t give to others out of the goodness of my heart, or that they can do the same, but none of us should feel required to do so. I would say the one exception to this rule would probably be children. If you bring children into this world, you do owe them something – and that is to do your best at providing them a safe, stable, and loving childhood. I guess pets fit that category as well. If you sign up to take care of something that can’t care for itself, you are essentially accepting that responsibility.
Outside of that, I’m not sure if any of us should feel like we have to fully take care of others emotionally, mentally, physically, or materially. We all have a responsibility to do our best to meet our own needs, and while that may mean reaching out for help now and then, we have to realize that sometimes we may be turned down and that is ok. If so, we just need to keep looking I suppose.
As someone with disabilities though, I do want to say that I do feel it is vitally important to have public programs and assistance available (whether these be government or charity systems) for those of us who sometimes struggle more than others at being “functioning adults”. To me, it is just a simple matter of society welfare and empathy that should strive to help anyone who falls through the cracks.
On Facebook I shared a post about some tax changes that are being made to churches and non-profit institutions. The debate that started, made me think about my own experience working for a non-profit organization and I wanted to share a little bit of that here. For around 6 months or so, I worked for a non-profit religious hospital system. My job was to be one of the people in the emergency department who collected patient information (especially insurance information) and processed payments.
From the beginning, it was drilled into us that it was about the money. We were hounded to make sure we collected certain percentages of money from patients while they were still there in the building, whether they could afford it or not. We were encouraged to apply pressure to them to pay at least a percentage that day, regardless of their personal circumstances. Although patients could legally ask to be billed later, we were told to NEVER tell them that, and only offer that option if they brought it up first.
We were told bluntly that the hospital had to make sure to look like they were doing enough “public outreach” to keep their non-profit tax status, so when they did run public assistance programs we were told to advertise them when talking to patients. It became clear that they didn’t necessarily do programs for the poor because they CARED about them, it was so they could continue to get the tax breaks and other non-profit advantages. I heard so much negative talk there about Medicaid patients and the poor. I was also told flat out that the company was purposefully looking into opening more locations in areas where the people were more likely to pay, and closing locations where the populations were poorer.
One huge issue I had was that even when someone was brought to the ER and died, we were pressured to try to get money from their grieving relatives. More than once, those in charge actually chose not to tell family members that their loved one had passed away until AFTER we collected insurance information and copays/deductible payments. They would send us in, and we would know the family’s loved one was gone, but we were told to lie and pretend we knew nothing. This killed me to have to do. One time a lady begged me for information on her husband who was dead, and I couldn’t tell her anything. I also struggled to go up to a mother whose child has just tried to commit suicide and ask her for money. I felt like scum.
In the end, I couldn’t keep this job due to my own health issues, but I couldn’t have kept doing it with a clear conscience either.
Recently I have been having quite a bit of success selling my artwork and I am so thankful! It means the world to me to know that people love my art and want to support my creative efforts! I do have something special I am doing with the proceeds I get from my art and I wanted to share that, so that if you are purchasing my art, you will know how you are helping me in multiple ways.
As many of you know if you follow my blog regularly, due to worsening chronic mental and physical health conditions, it has been hard for me to work outside the home for a while. I am hoping to get my SSDI benefits at some point in the future, but it can take years for that to happen due to backlog. I in no way feel bad for going after these benefits since they are not charity or welfare, but instead are the very benefits I paid into for years. I think it is ridiculous how long many of us have to wait to get a real person to make a decision for benefits we worked hard for over many years.
Due to my trouble working, I constantly fear that were something to happen to my husband, I would eventually end up homeless once the little bit of life insurance ran out. It is a terrifying thought that haunts me every single day. I am not guaranteed eventual approval of my SSDI claim, nor do I have any way to know for sure when I will find out since I am still waiting for a hearing date to even be scheduled.
So, I figured that instead of simply living in fear every single day without taking any real action to plan for the future, that I could take small steps to try to do what I can to provide any measure of security for myself. I have decided to start saving every bit of money I get from my art sales and book sales, to hopefully help build a nest egg to provide a little extra help if someday I need it. I have also been adding extra cash here and there that I manage to save to the “future fund”.
Yesterday I was supposed to go to therapy, but I was feeling really sick and ended up calling off. Whenever I have to do that, I always end up feeling bad, like it is my fault that I have these health problems and often have to cancel appointments or activities.
Honestly, nowadays I don’t even schedule much of anything outside of medical appointments because I would rather not plan anything than have to feel like I’m letting myself or others down if I’m too sick, depressed, or anxious to go. It really isn’t a fun way to live, and it frustrates me. I often feel like I’ve almost given up on living a normal life and that saddens me.
On the plus side, I am fortunate to have a supportive husband and still have a place to live and food to eat even though I am too sick to work a regular job. I really don’t know how people like me make it without support, especially since it can often take years to get any help from disability. If I had tons of money, I would spend it helping out those who are in similar predicaments, whether they struggle with autism, mental illness, physical illness, or a combination of all of the above like me.
Last night I had a really bad panic attack. The situation that triggered it is a complicated one that has me feeling rather torn in half. As I have probably mentioned before, my husband is a special education teacher. He is extremely devoted to his work and his students and loves what he does. This past Monday, he found out that one of his prior students, a girl who is now 19, needs a place to stay. My husband would like for us to take her in. I am really conflicted about it.
My husband and I used to do foster care, so I’m not unfamiliar with taking in strangers and looking after them, but the reason we had to quit foster care was my deteriorating health. That worries me about taking in a new, adult person who has both emotional and developmental issues. It also worries me because we recently downsized into a much, much smaller house and the autistic side of me is deeply worried about having no privacy or time alone which is essential to my well-being. Plus, I don’t know where we will move all the stuff that is now in the extra room.
On the other hand, I do feel deeply for this girl who has been through A LOT. My heart aches for anyone who already struggles with physical or mental disabilities and then has to add the weight of being abandoned or alone. She is living my worst nightmare in many ways and I can’t help but feel compassion for her. However, having never met her myself, I also worry about whether we would be a good fit or not. Often, that is something you just can’t tell until you live together, and if we do take her in, there is a good chance we would need to keep her at least a couple years until she graduates school and is moved into some form of independent living housing.
On social media and in real life, I hear a lot about how the poor “take advantage” of the system and how they “waste what they have” or are “just plain lazy”. Of course, these comments always seem to come from people who are at least close to middle class and have never once gone truly hungry, been homeless or lost everything they have through some cruel twist of fate. Having grown up in a mostly one-parent family that did accept government and charity assistance on occasion (even though my mother often worked MORE than full time), I see a different perspective.
Sometimes the decisions that the impoverished make do contribute to their own problems, but often this is due to poor foresight or desperation. They may make rash decisions based on immediate needs and not long-range goals…but that is because they are worried about survival right now and fighting for survival tends to occupy all your attention. When every day of your life is spent wondering how you will eat and find or keep shelter, there is not much energy left for self-help philosophies or economical posturing. Glimmers of hope might break through here or there (a better job, higher education, etc.), but often these desires are washed aside by the necessity of making it through this month, this week or even this day.
I will admit that on occasion the impoverished may seem to purposefully waste money. Buying a lottery ticket, cigarettes, alcohol or junk food may seem like a huge waste when someone is down to their last dollar. So why do they do it? I think it is like Vincent Van Gogh once observed, they are attempting to “revolt against the misery” of poverty. They are laughing in the face of danger and saying that this miserable world isn’t going to steal every bit of enjoyment from them. It is not really wise, but it is an emotional reaction to a life that often seems to have no hope or end.
Perhaps it is for the same reason that so many employees (even those in low paying management positions) steal from the big, impersonal corporations they serve, even if all they take home is a box of ball point pens or a few rolls of toilet paper. I’m not saying stealing is right, but in the human mind, there is always the desire for the underdog to score a triumph (even a tiny one) over who they see as the big bully on the block. All of these seemingly poor decisions are really just a way for those who feel ignored and despised to give this unfair, greedy world the middle finger. A way to quietly rebel, even if no one notices.
I have recently been challenged by a few different people to do the ALS ice bucket challenge. First off, I want to say that ALS is a horrible disease and I am glad that it is currently getting all this attention and the donations. My husband happens to know someone from his old job that has ALS and it has been tragic watching her deteriorate so quickly, not to mention what it has put her family through. So in no way do I want to knock ALS charities or those who donate to them.
However, I do not see the need to dump ice water on my head in order to donate to a charity. I enjoy donating to a variety of charities year round and honestly wish I had more money to do so more often. Fads like the ice bucket challenge can be useful in bringing important causes to our attention and getting those who don’t regularly donate to charity to give it a try, but not everyone is a “fad” person. I am not a fad person. I normally don’t even know about fads until they are close to the end. I will say that the ice bucket challenge has brought some fun moments even to us wallflowers (some of the highlights for me were Cookie Monster and Kermit doing the challenge and seeing Bill Gates, Patrick Stewart and Charlie Sheen add their own personal twist). I will fondly remember this fad, but I am just not big on joining in. I guess you can call me a party pooper, rebel, or wimp if you want to.
I would also like to say that with all the love and support ALS charities are getting right now, I will probably be making my donations to other charities I am passionate about because I know they are still struggling at the moment. The charities I generally donate to are either related to animal welfare & environmental conservation, helping the poor or taking care of the sick. Some of my favorite charities, which I would highly recommend are Doctors Without Borders, The American Red Cross, Children’s Miracle Network, St. Jude Children’s Research Hospital, The World Wildlife Federation and The Humane Society (I also support local causes whenever possible). I would suggest when you look for charities to donate to that you start with what matters to you personally and then research which charities in those areas have good ratings, that way you make sure your donations actually go for what you want them to be used for (you can find charity ratings and financial information on websites like http://www.charitynavigator.org).
I must look like an approachable person, because I often get random strangers coming up to me and starting the oddest conversations or just saying random things out of the blue. This often happens when I am having lunch at a fast food restaurant for some reason. I have had strangers come up to me and say all kinds of things, from the construction workers at Arby’s who accused me of skipping school and wouldn’t leave me alone until I showed them some ID, to the elderly man at McDonald’s who came up to me and said that he just had to tell me that I was “one of the most beautiful girls he had ever seen in person” (I must admit when he said that I thought he might need new glasses lol). I’ve had other strangers start random conversations with me about religion, politics, food, cats…and lots of other stuff I just don’t remember right now.
However, today’s chance encounter at Wendy’s was even odder than many in the past. I was sitting in the Wendy’s dining room, eating my french fries and working on puzzles in my word games book, when I noticed someone standing over me. I looked up to find an older African American gentleman who was dressed a little eccentrically (he had thick chains hung in an X shape on his chest over an old faded rock t-shirt). He handed me a quarter, smiled and walked away. I looked at the quarter and at his back – a little confused. Never had a stranger just walked up and handed me a quarter unless I had dropped one or left it laying somewhere. A few minutes later, I noticed him standing over me again. “Are you a school girl?” he asked. “No, I graduated,” I answered (not bothering to say that I had graduated about 13 years ago). He handed me another quarter. I thanked him and told him he was very kind and he smiled and walked away again.
A few minutes later, I was about to throw the rest of my food away (just some leftover fries) when he stopped me and asked if I was going to throw the fries away. I answered yes and he asked if he could have them. I started to hand them over, when another man (a Caucasian businessman from the looks of him) overheard our conversation and asked the elderly man if he had any money for food. “I had fifty cents, but I knew that wasn’t enough to buy anything to eat, so I thought I would give it to this sweet young lady in case she needed it,” he answered.
I was a little stunned by the whole exchange and not sure what to say, but the businessman jumped up immediately and took the old guy up to the counter to get him some lunch. I looked at the quarters and realized that even though I had wondered why anyone would give a stranger two quarters, that this had been all the man had to offer and he had wanted to give me something as a gesture of kindness. I thanked the businessman for his kindness to the elderly man and headed out for my doctor’s appointment which was next door. When I told my doctor about the encounter, he was pretty sure that he knew the older man. He explained that the man lived nearby and had some mild to moderate mental disabilities. You just never know who you will meet in this world or how they will impact your day.