Frequently Asked Questions
What is wrong with you? What do you mean when you say you're sick?
I've struggled with health problems my entire life, but they intensified in the last 10 years. I had a partial hysterectomy at age 30, and I have a kidney disorder that causes me to produce stones. In the last 5 years I developed gastric problems that cause severe issues when I eat. This has caused me to lose close to 100 pounds since 2014. These health issues cause bouts of intense pain, nausea, dizziness, brain fog (confusion), and other annoying symptoms.
I have recurring pain and severe nausea that never goes away. This greatly affects my mood, energy, ability to do basic tasks, and ability to be around people. I always need to be around a bathroom, and in certain situations I cannot eat or I'll be unable to participate in an event. Food causes massive problems (please don't ask me to discuss this with you unless you're a doctor who is going to treat me) so my safest bet is to avoid eating at all if I have obligations.
I am hard of hearing; this means that while I can hear, and communicate orally, not in sign language, I have hearing difficulty that makes it almost impossible to hear in certain environments. Loud environments with lots of people talking and background noise are extremely difficult for me to hear in. You can read more information on how to
communicate with people with hearing loss here. It is most helpful for me, if you want to speak to me and want me to hear you, to follow the suggestions in the linked article. If it is a particularly loud environment, I may not be able to talk back because of other issues, which you can read more about below.
I have lots of issues with my throat that cause problems swallowing, breathing, and talking, especially talking in loud environments, which unfortunately now encompasses virtually all environments: if you see me out, especially at an event that is loud like a concert, it is extremely difficult for me to talk in a raised voice, something that many healthy people take for granted and don't realize they're doing. I am not able to talk in a raised voice without coughing uncontrollably; please do not be offended, or think I'm sick/contagious: it is because I am trying to talk that my throat is irritated. ***
This was the case before coronavirus; with the current state of things, I am highly anxious about spending any time in public due to this problem. Because we need to wear masks and stand further from each other when talking, I have to project my voice louder and it is painful, the coughing is terrible and comes on very quickly. Obviously, it is a terrible time to be a chronic cougher. I may never go in public again.
extreme motion sickness and vertigo, even turning my head too fast can cause me to lose balance and feel woozy. I have constant pain that is moderate and severe pain that comes and goes. All of these issues wear on my energy and I generally only have a few hours that I can be awake and working before I have to go back to bed.
I detail all of this because people ask me all of the time and it is a major time suck, so it's more efficient to have it listed here and refer people to this page rather than spend all my time repeating these same things over and over.
What can I do to help with your health issues?
Stopping me when you see me in public to ask me specific questions about my health problems is not helpful, especially if you're not a doctor and can't offer some direct way to make the pain and nausea stop. Understanding that this is really frustrating and that I don't want to talk about it when you see me out is one thing that would be really helpful. While I understand that it comes from concern, when a lot of people are concerned and asking the same things, I spend a lot of the time that I could be enjoying myself outside of the house answering questions about my terrible health. Please do not make suggestions to me of things that you think will help---I can guarantee you I've already thought of and tried it before.
Other than that, remembering, understanding, and accommodating when necessary is very helpful. I need to always know where the bathroom facilities are. I can't be in extreme heat/direct sunlight. If I seem quiet or look angry/concerned, it is always because I am feeling particularly terrible and very nauseated. There are a lot of times where it gets to be too much and I need privacy and time to rest.
At this point I am not getting any help from actual doctors, and it would be helpful to have
an advocate that can help me find a physician that will actually help me and go with me to appointments to help me defend my rights to be treated.
The most important things I need:
- for the nausea to stop or get demonstrably better
- for the pain to stop or get demonstrably better
- to be able to relax and/or sleep
- to be able to eat like a reasonably normal person
- to be able to travel like a reasonably normal person
- funds to pay for existing bills and to see specialists
I am always in need of work that accomodates my declining health, as my husband supports the both of us and it is a strain on him. Work that allows me to be on my own and set my own schedule as much as possible is most ideal because of the problems and restrictions I have.
Why don't you just work a side job, as a waitress or something?
I am really sick and getting sicker, and my health problems limit what I'm able to do.
Being a full-time studio artist should not be something that is only available to wealthy people and their children. I don't want to work another job and then squeeze my work into the cracks leftover---I have enough ideas and motivation to pursue my work full-time and then some.
I have a lot of skills and can work many jobs including and other than creative work, but creative work is definitely where I excel. I have severe health problems that limit what I am able to do.
You can see my work history here.
What do you want?
This is what I consider to be a successful life, in order of importance:
- to no longer be in pain and for the nausea to go away
- to be able to eat like a reasonably normal person without fearing painful repurcussions
- to live simply in a home that is private, secure, and paid for
- to have the space and time to pursue my artistic projects every day
- to no longer lose years of my life to be exploited for someone else's gain
- to be able to live, work, and engage with a community that is sustainably developing and values healthful existences for all of its citizens
- to be able to interact with the world to discover new things and in return make myself discoverable to the world and share the things I know and have collected along the way
This is all I want. List will be amended as necessary, but notice things that are NOT on this list: being famous, being rich, getting a ton of Likes, going Viral. Success for me is living sustainably in a community that values me and that I in turn add value to; it is not about celebrity, status, or wealth. I think that people clamoring for attention and fame often comes at the expense of genuinely creative people like me trying to make a living with our creative work.
We are currently in a bad living situation and are trying to move somewhere much more private. This is something that is necessary for my physical and mental health. All communities, even and especially urban ones, should value and protect the rights of citizens to have a private home, free from pollution, noise and environmental, and free from harassment.
Do you sell your work?
Yes. If there's something you want, contact me.
Can I hire you?