The skies are grey and cloudy here in Calgary today. There is a bitter chill in the wind, the air already bitingly cold and unseasonal. It's cold enough that the rain falling fitfully outside my window might even had the odd flake of snow in it. This weather is far different from just a couple of days ago, but it's the reality of spring here in southern Alberta; shorts one day, parkas the next.
This weather is probably not helping my mood all that much. I'm grumpy today, feeling angry about my life situation, especially my financial situation. I'm poor. Based on my income, I am subsisting below the poverty line. Based on my budget, I am falling behind about $500 each and every month. I survive only by the good graces of generous friends, and Katherine.
It's been suggested to me that I could work, just enough to make that $500 a month. I suppose that's true. The problem is that I am so completely defeated by ALS that the very idea of putting effort into anything is beyond me. It's the best I can do just to keep going each day. It takes all that I have to go through the process of getting up, dressing, and existing. Everything that looks like it will take more out of me is something I feel completely unable to do. I'm beat, and ALS is beating me more and more every day.
It hits me worst when I consider discretionary income. Everything in my budget is consumed by housing, food, and living expenses. Even so, I am falling behind each month on my condo fees, building up ever more debt as time goes by. Anything I want outside of the very simplest of basics is beyond my ability. If I want something, simply because I want it, I cannot have it without asking someone else to buy it for me. I could use my credit card, but even that has a limit on it.
If you hear me talking about luxuries, like wine making supplies or road trips, rest assured that these things are only possible because of the generosity of others. Katherine is by far and away my biggest contributor, but the donations to my blog have helped me do things like buy wine kits and have a photograph of much children enlarged and mounted so it can hang on my wall.
I hate not having money. It depresses the hell out of me, especially when I realize the impossibility of my working. I know there are possible solutions; I could write for money if I can find a publisher and a subject, I could see about working at Walmart as a greeter a few hours a week, I can do more begging. But the reality is that each day I am less and less able to do any of these things.
I feel so trapped, so disempowered, so disabled. I hate living within my means when my means are so meager. I should have died last November, when I ran out of money. That was the plan. It didn't work out that way. Nothing has worked out according to plan with this stupid disease. It sucks.
I know every situation is different, but Im pretty disabled. Cannot get on/off toilet by myself, cant wipe my butt, cant cook, cant get into/out of bed on my own, cant get dressed on my own, cant put on my own shoes, cant brush my hair, cant lift a cup of coffee, cant hold a woman in my arms, cant use the apostrophe key ('), and the list goes on and on (and on).
ReplyDeleteThe one thing I do, is work. My illness is not terminal, well, maybe not for 10 or 20 more years hopefully, so I have more motivation to work than you. I use my mind to work in an office and make well over six figures a year.
I dont belittle those on welfare, SSI, or SSDI, because at some point, maybe when it gets too hard to type on a keyboard, I may be joining them. They say the unemployment rate, even in a good economy, is 70% or more for "disabled" persons. I do get VERY angry at those who go on disability for a "bad knee" or "anxiety" or "obesity". Those people can work and they are exhausting the system and the good-will of others at an alarming rate. By the time I need it, Im sure there will be major reforms and major cutbacks. Thats why Im putting as much away as possible and working until Im literally unable to.
So what Im saying is, if you can work, and its something you enjoy or at least can find joy in, go for it! What about working part time or as a consultant for your former employer? Do you have any connections from that life you could call upon?
There will be time to NOT work later for you, especially since you seem to be "lucky" to have a slower progressing form of ALS.
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ReplyDeleteIt's always comparable. You shouldn't have to give up the benefits of working like you did for 30 years or so, expecting you would live the same way on and on at salary and beyond.
ReplyDeleteWhat's shocking is what happens when money runs out. So, I will give an example of the comparable. I found out about not having money, after having worked just like you for years and years, but a 50k income in a city does not go far and for people who say you should have picked up and moved somewhere else - be paid less and pay less rent - it's very hard paycheck to paycheck to pick up and start somewhere else with no backup.
After a next door fire and not being able to go back to the unit and finding the next day my branch office was closing, there you are with very little savings having to find an apartment without a job and trying to buy new furniture, clothing, and all new things, not to mention moving expenses, security deposit, and a moving truck. Not having any family and taking a part-time job locks you into something else. If you lose a part-time job, you are sunk. And that's what happened.
I learned that people in America on food stamps cannot buy soap. They cannot buy soap if they do not have kids under 18 or are not 65. But if they do have kids or they are over 65, they can take out cash on an EBT card. They can buy a barbecue at Family Dollar or they can take out cash and go to a job interview or buy a ticket to Las Vegas.
People who do not have kids cannot buy soap, paper towels, toothpaste, shampoo, tampons, WD-40, a light bulb, or a sponge for 50 cents. You can't take out cash so you have no money for the bus, no money for laundry, so how are you going to get a job?
Then, the ALS diagnosis and trying to do all the things that you used to do. You, and everybody else I read about, seems to have excellent care. My ALS clinic responded, when I said I cannot lift my foot to get on the bus, why didn't I wait for the next bus??
That's how I learned about no money. On the other comparative side: you should not have to worry about money at all because you have lots of family and they are all earning. I know it sounds crass, and you would never say it out loud, and nobody wants to talk about it, but surely combined there should be no reason for you to have to even ask.
It should be recognized that you – having gone on vacations and had a lot of recreational fun, that for you to be without essentially shuts down you looking forward to things the way everybody else looks forward to things. With so many things limited with ALS, you should always have a cheat sheet to the next adventure.
You never had to face how you were going to buy a bar of soap or toothpaste, and comparisons don't count, but from where I sit i'm sure I've been spared from having to ask people for money to do fun things. I would like to think there'd be a pool of money set aside for you without you having to ask. Remember, I said it, not you.