The Conference
May. 4th, 2019 06:58 am![[personal profile]](https://www.dreamwidth.org/img/silk/identity/user.png){kind=small}
lillilahI'm having trouble talking about the conference, but I'll try to express myself about it here.
Was it useful? Definitely. I had wanted to see an eye doctor, and now I know that I need a neuro optometrist. Also, I know now that we probably have brain stem lesions, not just functional damage. I had wanted to get the process of getting studies about treatment options moving. It sounds like there is a concrete plan for what has to be done that is moving at its own pace. The doctor who runs the foundation assured us that progress is being made, and we need to be patient.
Do I want to go back? Yes.
How often do I want to go back? This is very hard for me to answer. I feel a strong connection to the other attendees, because of our shared experience. Part of me wants to return every year to form a relationship with this community. However, there is a part of me that wonders if I should really form a relationship with a bunch of sick people and spend so much time focusing on my illness. There is knowledge and a sense of community, but there is also a lot of anger and frustration. Also, there is the obvious issue that it is financially, emotionally, and physically taxing to make this journey. I need to talk to my psychologist about this. Probably, I will return regularly but not every year.
Was it useful? Definitely. I had wanted to see an eye doctor, and now I know that I need a neuro optometrist. Also, I know now that we probably have brain stem lesions, not just functional damage. I had wanted to get the process of getting studies about treatment options moving. It sounds like there is a concrete plan for what has to be done that is moving at its own pace. The doctor who runs the foundation assured us that progress is being made, and we need to be patient.
Do I want to go back? Yes.
How often do I want to go back? This is very hard for me to answer. I feel a strong connection to the other attendees, because of our shared experience. Part of me wants to return every year to form a relationship with this community. However, there is a part of me that wonders if I should really form a relationship with a bunch of sick people and spend so much time focusing on my illness. There is knowledge and a sense of community, but there is also a lot of anger and frustration. Also, there is the obvious issue that it is financially, emotionally, and physically taxing to make this journey. I need to talk to my psychologist about this. Probably, I will return regularly but not every year.
