Breaking the Chains
I have a longstanding fondness for time travel stories. They are a form of mental modeling of decision trees: If I choose A, that goes HERE, and if I choose B, that goes THERE.
That was done consciously and intentionally as a form of self-study so I could figure out how to find my path forward in this battle for my health.
Thus began a policy of getting rid of everything periodically for several years, living a fairly spartan life overall plus finding ways to break the cycle when getting rid of something old and replacing it with something new. So that was a major turning point in how to escape my past -- my pattern of health issues and my broken mental models that they were rooted in.
Another critical turning point earlier in the process grew out of my policy of kind of "meditating" while sitting in the ER waiting room waiting to be seen by a doctor. I was a military dependent and it was a big teaching hospital, so I tended to see a different doctor every time I was in the ER.
So I would try to center myself and try to put down the mountain of baggage I was carrying from the zillion other times I had seen a doctor and been treated really crappily. One day, this paid off big time.
Some intern and I hit it off and got along well. He was still a doctor in training and wasn't confident he was doing the right thing, so he tried to call someone to double check his decision to prescribe me Levaquin but he couldn't get the on-call doctor on the phone.
After a few attempts to get the guy on the phone, I finally told him "My diagnosis is cutting edge. There isn't anyone on the planet with a decade of experience treating people with atypical cystic fibrosis. The diagnosis hasn't been around that long. Your best guess is as good as anyone's."
With that he went ahead and prescribed me the Levaquin and my condition stabilized further and I began to grow stronger and that happened because I was able to kind of clear my mind of baggage and establish good rapport with this guy and engage in good communication because of it. I was able to, for one moment, "stop the merry-go-round and get off it." and that proved to be an important turning point that put me on a better path.
At a later date, I woke up out of a dream about someone or something being chained down and the chains were embedded in their flesh because they had been chained so long, so they couldn't break the chains on their body. They escaped by breaking the chains at the other end, where it was connected to the wall or floor.
And I woke up and realized this dream meant that I couldn't change my genes, but I could break the "chains that bind me" metaphorically -- environmental stuff, lifestyle things, social garbage. The founder of 23 and Me says surprisingly similar things to stuff I have thought, about how it's never entirely in your genes and we are just beginning to explore environmental factors in outcomes for genetically-based conditions.
If you have a serious health issue, the sad reality is that you may fairly often find yourself having to choose between your health and some person in your life. In a nutshell, if they stay, you will stay sick because they don't want to get with the program.
This is the crux of the issue for why I am divorced. When I was diagnosed with atypical CF and doctors were telling me "People like you don't get well. Symptom management is the name of the game." my husband agreed with the medical establishment and the entire rest of the world that I was doomed to an early grave and there was nothing we could do about that.
I decided that attitude was going to kill me and I got divorced. I'm still alive and vastly healthier than I was while married to someone taking a really lax attitude towards germ control because he felt like:
Having agency over my life is the critical detail that makes it possible for me to get my symptoms under control and keep them under control. Everything in my life has to bend to that rule.
I have done gig work and freelance work in recent years to protect my agency. I have been celibate for reasons of germ control but also because I'm a woman and the cultural norm is that women defer to their men to some degree.
The reality is I will likely be alone for the rest of my life because I need a man who will accept a very long list of restrictions and NOT hassle me about it. This includes but is not limited to:
There's no fate but what we make for ourselves.
That was done consciously and intentionally as a form of self-study so I could figure out how to find my path forward in this battle for my health.
You can choose
One rule: Don't bring anything back.
Thus began a policy of getting rid of everything periodically for several years, living a fairly spartan life overall plus finding ways to break the cycle when getting rid of something old and replacing it with something new. So that was a major turning point in how to escape my past -- my pattern of health issues and my broken mental models that they were rooted in.
Another critical turning point earlier in the process grew out of my policy of kind of "meditating" while sitting in the ER waiting room waiting to be seen by a doctor. I was a military dependent and it was a big teaching hospital, so I tended to see a different doctor every time I was in the ER.
So I would try to center myself and try to put down the mountain of baggage I was carrying from the zillion other times I had seen a doctor and been treated really crappily. One day, this paid off big time.
Some intern and I hit it off and got along well. He was still a doctor in training and wasn't confident he was doing the right thing, so he tried to call someone to double check his decision to prescribe me Levaquin but he couldn't get the on-call doctor on the phone.
After a few attempts to get the guy on the phone, I finally told him "My diagnosis is cutting edge. There isn't anyone on the planet with a decade of experience treating people with atypical cystic fibrosis. The diagnosis hasn't been around that long. Your best guess is as good as anyone's."
With that he went ahead and prescribed me the Levaquin and my condition stabilized further and I began to grow stronger and that happened because I was able to kind of clear my mind of baggage and establish good rapport with this guy and engage in good communication because of it. I was able to, for one moment, "stop the merry-go-round and get off it." and that proved to be an important turning point that put me on a better path.
At a later date, I woke up out of a dream about someone or something being chained down and the chains were embedded in their flesh because they had been chained so long, so they couldn't break the chains on their body. They escaped by breaking the chains at the other end, where it was connected to the wall or floor.
And I woke up and realized this dream meant that I couldn't change my genes, but I could break the "chains that bind me" metaphorically -- environmental stuff, lifestyle things, social garbage. The founder of 23 and Me says surprisingly similar things to stuff I have thought, about how it's never entirely in your genes and we are just beginning to explore environmental factors in outcomes for genetically-based conditions.
Anne Wojcicki : How to Build the Future
If you have a serious health issue, the sad reality is that you may fairly often find yourself having to choose between your health and some person in your life. In a nutshell, if they stay, you will stay sick because they don't want to get with the program.
This is the crux of the issue for why I am divorced. When I was diagnosed with atypical CF and doctors were telling me "People like you don't get well. Symptom management is the name of the game." my husband agreed with the medical establishment and the entire rest of the world that I was doomed to an early grave and there was nothing we could do about that.
I decided that attitude was going to kill me and I got divorced. I'm still alive and vastly healthier than I was while married to someone taking a really lax attitude towards germ control because he felt like:
It won't make any difference.
Having agency over my life is the critical detail that makes it possible for me to get my symptoms under control and keep them under control. Everything in my life has to bend to that rule.
I have done gig work and freelance work in recent years to protect my agency. I have been celibate for reasons of germ control but also because I'm a woman and the cultural norm is that women defer to their men to some degree.
The reality is I will likely be alone for the rest of my life because I need a man who will accept a very long list of restrictions and NOT hassle me about it. This includes but is not limited to:
- No carpeting, no fabric curtains, no particle board furniture, no upholstered furniture.
- No mattress.
- No vacations. Travel is hard on me and I don't do it for "fun," though I have done a lot of traveling in my life. I don't enjoy going somewhere for a few days for "fun" because it probably won't be any fun at all for me.
- No eating at restaurants he likes and I don't.
- No pets. No exceptions.
- No smokers and no tokers and preferably no HISTORY of such.
- Germ control is my life. If you don't want it to also be your life, you can't have me. Period. End of sentence. No exceptions.
Nothing takes the past away like the future
