There is no feeling better, at this point. I have lost faith. This is not a world in which caring for people equals taking care of people. It is a society in which caring for people is an opportunity to make money. No profit, no care.

Health:
My health care is subject to corporations figuring out if they can make a profit. Sure, Massachusetts has a public health insurance program. What that means is that they dictate to the private insurers and care providers how much they will pay them. The providers then do anything they can to squeeze a profit out of that. They get their profit by denying you care, if they are an insurer. Dragging the approval process out for months, even if a patient is suffering, because they save money. Then there are agencies to provide care. You can’t go directly to a nurse or a doctor. Why? Because they aren’t equipped to manage the byzantine system. So, they work through agencies. But, the agencies need to make a profit. So, after the insurance company offers them even less than the state offers the insurance company, they take a cut before paying a practitioner. And they squeeze the practitioner. A nurse will receive half the normal pay to provide care for me now that I am on MA Health. That is, if they ever approve me getting the care. But, an insurance company and 3 different agencies will make a profit. So will a pharmaceutical company. And a medical supply company. But, apparently, it isn’t enough profit, because I’m still not getting care.

I am only walking at all (and very painfully) because of pain meds now. I can’t stay on these. They are intoxicating and that can’t be good for my body. I am not a fan of addiction. Without the auto-immune treatments, inflammation and pain take over my body (I have a demyelinating disorder. ) I have a back injury – a disc is damaged. With inflammation, a nerve going down into my hip, around the front of my hip and down the front of my leg gets pressed. This causes excruciating pain, but more critically, it causes my back and leg to collapse when I am standing. This will not go away without the auto-immune treatment. I will be unable to walk at all, eventually. But, if there is not enough profit for others, my suffering is moot.

Home:
Any help out there to keep families in their homes after a financial crisis is only “helping” them if it maximizes how much money a bank or some investor can make. It has nothing at all to do with doing what’s best for families. We’ve been in this house since 1996. Zuna was born here; in the house. My dog has been here for almost 15 years. We have a community garden in our yard where several families grow food. But, I became unable to work in 2006, so we lost my income. We were barely making it when Greg was laid off his job in 2011. Although the bank sends you papers every month which say that they have programs to help if you’ve had a sudden loss of income, they lie. The only circumstances under which they will give you a forbearance is if you already have another job lined up. Greg was without a job for 18 months. Rather than recognize what an enormous crisis that was and how financially devastated we are, now that he has a job, the bank will only reinstate the mortgage if we pay them something close to $60k in back payments and interest and fees they’ve tacked on. (They make even more money from our crisis than if we hadn’t had a crisis!) Moreover, when we talk to Boston Community Capital (BCC) to see if they will help us keep our home, they (and any finance company) will average the last two year’s income to determine income eligibility. Since 18 monts of that were unemployment, the average becomes too low to qualify. Doesn’t matter that there is a history prior to that and that the current income level is back at the historical level. Plus, even BCC pegs every part of their process based on generating a return to their investors. It is not at all about a family and their home. It is all about making money for other people. There is no program out there which helps families who hit a crisis and need to recover without having to lose everything. Not one. Everyone program is about maximizing income for someone else. That’s the key benchmark. “Can the bank more money selling your house than working something out with you? Then, it will be sold.” Boom. You’re homeless. Oh well.

Disability:
The disability front is no better. Though I have cognitive impairment and the impairment has to do with executive functioning (tasking, etc), if I haven’t filled out paperwork propoerly, I cannot possibly be disabled. I am clearly a fraud. (Let’s not even get into how it become your job to “fight” for help when you are sick. If I could fight, I probably wouldn’t need the help.) My husband wrote on our tax returns that I did “accounting” when I helped a friend’s business in 2009. It was a highly facilitated work situation which lasted just a few months. It was the act of friend trying to help me out. I wasn’t an “accountant”. I’ve never been an accountant. I did some bookkeeping. So, don’t have friends give you mercy work or that will disqualify you from being disabled. You should have starved instead. How dare you let friends help you and then claim that you are disabled. You couldn’t possibly be. I keep trying to teach knitting classes because I need the money. And psychologically it is good for me to do something. Anything. But, I often have to cancel sessions because I can’t physically or cognitively manage it. I get paid by the hour, so I don’t end up earning very much. But, since I am doing it at all, I must be “able.” Don’t try . You will be punished for trying and accused of fraud.

I don’t even want to get into the fact that though I contributed to SS for decades, they want to say I am not “covered” because I owned an LLC for a few years, wherein, any money you withdraw is not considered income until it exceeds any investment you made. It’s a quirk of the LLC legal structure. So, for the first years, though we reported the LLCs financials, I did not have taxable income. This apparently renders me ineligible for social benefits.  Unless I can prove I was disabled by 2008. Which I was. I have paperwork from the doctor and will be happy to share it with anyone who asks.

But, even that is looked at with suspicion. You see, I had Lyme disease. Many docs would say I still do. But, that’s not the point. I went to a doc in 2005 with symptoms, but it took two years to get a diagnosis. Then longer to recognize that going untreated for so long had left me with an auto-immune disorder. So, though I was living with the illness, Teh System doesn’t recognize me actually being ill until a diagnosis is given. I mean, clearly, all those records of doctors visits and symptoms (and one neurologist suspecting demyelination as early as 2006) don’t actually mean anything. You’re not truly sick until there is a diagnosis. Let’s not discuss how many Lyme patients go for years without a diagnosis. That’s a pesky little matter that doesn’t deserve consideration. Obviously, I wasn’t disabled until 2009, even though I became unable to function, at all, in 2006. And since, out of the prior 30 years, there were 3 in which I didn’t have taxable income reported, I no longer deserve disability benefits. Too bad. Go it alone.

Fine
I am going to lose my home because someone can make more selling it to someone else. I am going to end up in a wheelchair because it’s not in anyone’s profit interest to give me the health care I need. And I am not qualified for disability because I have struggled to keep working even though I wasn’t really able and have not earned a livable income in years. But, don’t worry, I’m probably just a fraud, trying to mooch off of everybody because, well, I’m just like that.

What’s the fucking point of this society? I worked from the time I was 17 until I couldn’t work any longer in my mid-40s. At every turn I am treated as though I am perpetrating some crime by being sick. People talk to me as though I should just be able to figure something out. I’m just not trying hard enough.

Fine. Somebody give me a job. Here is what I need: Many days I won’t be able to physically go anywhere. So, it would be best if I could work from home. I can’t be exposed to too much light, sound, motion or smells, or I will have seizures. I have almost no executive functioning, so I won’t remember if I completed a task or not. Often, even with reminder tools, I won’t remember the task at all. (I will post my medical records to document these limitations.) But, apparently, since I have an MBA, I am employable. I need a job ASAP so I can convince a bank to refinance our mortgage. (Or need a huge finder’s fee so I can get a new home.) I’m sure there is a huge market out there for what I can offer. There must be, because I’m clearly not disabled. I have an intellect. Often it’s sharp. Not so much these days with the pain meds. I’m more goofy than intellectual. But, I will need an assistant who can shepherd me through the day, reminding me of what I’m doing. Making sure I don’t fall asleep. (Oh, did I mention the profound exhaustion? Whoops.) The assistant may need to write or type for me when the tremors in my hand make it impossible for me to do those things. Perhaps said assistant could keep the house clean, too. If I have to do dishes, I’m wiped out. This grand assistant can also make sure that I don’t leave the oven on, put the mug of tea in the medicine cabinet or the iron in the microwave. (I told you, I forget what I’m doing.) I will need help getting to the toilet, too, sometimes. Not to mention, grocery shopping. Shopping of any kind is a big adventure with me. If I don’t collapse, I’m likely to get lost when I have a partial complex seizure from too much stimulation.

I know, I know. I can look good. We have structured our society so that someone in my position is alone all the time. Nobody sees me, except in my “good” days. So, of course, I look “fine”. Besides, while I might be able to learn to live through the pain, what is equally disabling is the neurological impairment. You can’t see that by looking. If you’re not seeing me, I’m probably in bad shape. I’m not being anti-social. Still, I can look good. Right. I’m great. So, give me a job. I expect offers to come pouring in, since we all support a societal structure which demands that I be “productive.” Admit it, even if you know me and you know my story, you tell yourself that I really could work if I just…. something. So, hire me. Give me a livable wage, already.