I have said this many times. I think the biggest reasons for starting each post don’t vary much. I work out my thoughts and my life by writing. I could just put in on paper and keep it to myself. But there’s more to it than that. Sometimes it’s easier to write a blog than email a bunch of people. One of my favorite reasons to write is to vent. I get out my frustrations by writing about them. I also like to keep track of medical stuff and save pictures here. I rarely think about who is going to read my blog posts.
I have said this many times. I honestly don’t know why people read my blog. I am pretty boring now that my full time job is being sick. You would think that if people don’t like who I am or what I write, they would go away and never come back. I do that all the time. If blogs bore me or the politics get irritating, I just move on. No need to stick around and hate them.
Without fail, the people who leave the nastiest comments on my blog are the ones hiding behind aliases. I also notice that the people who think I should follow their advice even if I don’t agree with it, are the ones who don’t understand my reality. It’s kind of like being mad that a young black man in a hoody does not want to take up jogging in the city. It’s not a good idea under the circumstances. It might be a good idea for YOU.
And how many people who point out my faults and dislike me for them are telling the story of their life, in public, for all to see? We can all find fault with other people’s looks or brains or choices. What good will that do? Shaming people doesn’t change them for the better. We only change when it’s to our advantage either financially or morally or spiritually or whatever. Some things just are. Disabled people are not a sexy, glamorous subject. Neither are people living way below poverty level. Most people would rather avert their eyes and forget.
Right now my greatest irritation is coming from a few people on support groups. I keep being told that housing for low income people is 30% of income. Nope, that’s only if you are lucky. Then folks insist that I am lying about how much SNAP I get. I wish! Others think all people on disability are lying, scamming and lazy. There are plenty of people who insist I eat all organic or gluten free or whatever they believe is best. Then from every direction I am told I would be better off with alternative medicine. Geeze, people, get a grip! How many times do I have to state my income and fixed expenses? That’s all I have to work with. REALLY. And no, the government isn’t as generous as you have heard on some talk radio show.
I don’t go to Food Not Bombs for fun and excitement. I go so I don’t have to live off dry beans and Ramen. The food I am given is not what I would choose if I could just buy things. I am grateful I get food. I don’t ask my church for food because it rarely turns out well. It’s easier, with less obligation, to get food from the anarchists. It was a real bummer I was in the ER on Saturday, instead of the park.
I could go on and on about misperceptions. There are lots of them.
Then there is imperfect old me. I have baggage. I was abused as a child and abused in relationships. I have made stupid mistakes and naive mistakes. It took a long time for me to grow up. I didn’t have a clue what normal was or how to be it. There are lots of labels for my deficits. PTSD, ACoA, chronically ill, and dozens more. Do people really need to keep bringing up all my classifications? I know I am a mess. I know I could be a better mess. So? Your point is? Have YOU fixed every flaw in your personality or health? Why not? Snicker…..
I am not a project. I welcome suggestions from time to time, but unless you are God, I am under no obligation to heed them. I have free agency and most of the time I know what I want or don’t want. I know what I can and can’t do or won’t do. It takes all kinds to make the world go around. I am not you.
Even though life hasn’t been easy…under the same circumstances, with the same knowledge I had when decisions were made, there is very little of my life that I would do different. Maybe my choices don’t make sense to observers, but they make sense to me.
Do I wish that outside influences on me had been different? You betcha! But those are things I had no control over. It doesn’t matter what I wish had been better or different. I can only keep moving forward.
If things are good, I mention it here and that’s it. There’s no angst. There’s not much to discuss. I regularly tell God about all the big and little things I am thankful for. When I talk to friends or bump into strangers, it’s generally a good time. Not much need to discuss it here. But….when I am mad or frustrated or trying to figure things out, it’s often on my blog. I need to get the bad stuff out of my head ASAP!
If you think I have missed some obvious solution, go ahead and let me know. Remember your solution might be my nightmare or impossibility. It’s a suggestion, not an imperative.
A few times I have told bloggers something I thought they weren’t aware of. It was sound information. They didn’t take it as helpful info, they thought I was being mean. Oh, well. Other times I tell people about things they are eager to know and they are happy. All we can do is guess at what the other person is looking for and do our best. Don’t take it as failure and don’t stop trying to help others. If you meant no harm, take no offense.
Gee, I got this far and got another not helpful and inflammatory comment. The person thought that me being virtually paralyzed, unable to take full breaths and choking wasn’t a good enough reason to go to the ER. I had written days before that I didn’t know what to do and didn’t know if I was going to get better or worse. My bad for not being clairvoyant. No matter what I do, there’s someone always way smarter than me on the sidelines. I wish I possessed such superior intellect and reasoning. Snicker…..
Today has been a challenge. I couldn’t swallow food this morning, but now I can. About a third of the time I choke on water. My chest still hurts like crazy and the asthma from yesterday still lingers. I have stayed as cold as possible. There have been no stroke- like waves of weirdness today. It still terrifies me to relive what I can remember of my body trying to shut down yesterday. When you can’t breathe, it feels horrible :-( When you can’t move, either, wow. It’s the stuff of nightmares.
People with ALS, MS, strokes, MG and all sorts of diseases live with scary flare ups and uncertainties every day. We all ultimately die. Sometimes our life can be prolonged. It’s not neat and tidy like on TV.
We live in the UNITED states. Disability and insurance for the disabled are federal and good anywhere in the country. Administration of health care is different from state to state. There’s no way to determine ahead of time if an area is going to be ideal or not until the experience unfolds. I had no idea that I would not get the same level of MG care in Utah that I got other places. I thought it might be better! In Vermont, rich and poor were treated pretty much the same. In NY, in the Adirondacks where I lived, was a mix. The problem was accessing specialists. So, I ended up back at my Vermont neuro, which was quite a trip. Arizona was a very divided state between rich and poor, but I lucked out with a good hematologist/oncologist. It doesn’t matter where I live…there will be pros and cons and trade-offs. One thing I love here is access to transportation thanks to my Paratransit card. I wish I felt better so that I could explore more. I might have had a totally different health care experience in another Utah town with a different insurance provider. I think here I have 3 or 4 choices of plans. It’s all a crap shoot.
I came to Utah when I couldn’t find affordable housing in Portland. I was excited about doing LDS stuff in SLC. I imagined myself staying busy with family history and temple work. I didn’t know I was going to get WNV and a cancer diagnosis and operations and other new disabilities. I didn’t even suspect that out here in the desert is some of the worst air pollution in the country! At least I wasn’t homeless :-) It was a lot easier to get an apartment here.
No matter where I go, what I do, how I feel or what kind of health care I get, there are going to be ups and downs. Any time the downs outnumber the ups, I am all for trying something else. I have no ties to Utah. I don’t really have any ties to anyplace. I am adrift. I miss the me that could live in the woods and be a farmer. That me disappeared years before I left Vermont. I have to keep adapting to each new reality. My favorite way to adapt is to go somewhere else and try something new. So…stick around or leave. If my roller coaster life is not your cup of tea, figure out where you’d rather be. If there’s something about me or my way of life that intrigues you, stick around. It seems so easy and sensible, huh? :-)