KosAbility is a community diary series posted at 5 PM ET every Sunday and Wednesday by volunteer diarists. This is a gathering place for people who are living with disabilities, who love someone with a disability, or who want to know more about the issues surrounding this topic. There are two parts to each diary. First, a volunteer diarist will offer their specific knowledge and insight about a topic they know intimately. Then, readers are invited to comment on what they've read and/or ask general questions about disabilities, share something they've learned, tell bad jokes, post photos, or rage about the unfairness of their situation. Our only rule is to be kind; trolls will be spayed or neutered.
I have a disease called hypoparathyroidism. There are four little parathyroid gland in the neck their only job is to regulate calcium levels in the blood. Three of mine were damaged in a botched thyroid surgery in the early 90’s. I was very sick and did not have insurance. No job, no insurance. I found a program that utilized interns. Unfortunately it did not really include the follow up that I needed. When my parathyroids failed after the surgery they wouldn’t let me out of the hospital for 5 days. They told me that this was a temporary problem and I would be fine. I was much better, not having an extremely hyperactive thyroid, so I thought I was better.
After the surgery, not being too healthy, I started doing temp work and just kept doing it for the next 15 years. In each position I quickly became the person that could solve any software problem and implement any system. If I needed to know something I picked up the manual and found the solution. I remembered everything especially numbers, they just stuck in my brain. I learned anything and everything quickly.
I realized that my body broke before I realized that my head was broken too. I stopped sleeping and started having serious problems with carpel tunnel about the same time. My solution was to try strengthening my body so I could do more, isn’t’ that what you are supposed to do?
I tried swimming; instead of getting stronger I injured my right shoulder. I figured it was a fluke a then my left shoulder started to hurt. I let the injuries heal and tried slowly building back up a number of times. Each time the pain came back a little faster. With the advice of my wonderful chiropractor I gave up swimming. I tried yoga, a gentle 20 minute routine, with an emphasis on proper form and core development. Figured I would start slowly and build up to more. It didn’t work that way. Instead of getting stronger one by one poses were eliminated due to various muscle injuries until I was forced to realize I could not do yoga.
The mental issues started becoming more of a problem in 2004. I was starting a business with my husband. I did sales and all the office work while he made beautiful counter tops out of Corian. By the second year we were making a living so I volunteered to be the exhibits coordinator for YearlyKos, the first Netroots Nation convention. I thought I was tiring easier and becoming more of a flake because I was doing two full time jobs. A reasonable conclusion, considering. I kept it together okay until the convention where I absolutely fell apart. Once again I really thought it was because I wasn’t strong enough. I stopped all volunteer activity and found someone else to do sales. Still I did not get better.
When the Obama primary election came around I got myself elected as first round delegate at the caucuses. I wanted to go all the way but at the first level daylong meeting I was forced to admit that I could not properly represent anything; this was where I started to understand that outside stimulus overloaded my system.
I stopped being able to solve computer problems that came up. I made the excuse that it was understandable because I wasn’t that involved any more. It wasn’t until I realized that if I didn’t set a timer when cooking rice I would burn it every time. Once, that’s a slip, no big deal, but time after time where I would forget boiling water, well it was something else. I went back to the computer to research my disease. Sure enough the culprit is calcium. Low blood calcium makes the entire nervous system more excitable.
Instead of one impulse to contract a muscle my body gets the initial impulse to contract then it just keeps getting impulses to contract. It’s the same thing with thought and emotion. It’s like leaving an electrical circuit open that just keeps firing. The best I can describe is that one thought sets off a cascade of mental energy. It’s like being overwhelmed with light. I’m still unclear on all of this but I am beginning to understand.
About 10 years ago I started quilting. I didn’t even know what quilting was but I wanted to quit smoking and thought it would be good to have something to do with my hands. I got myself a crappy sewing machine and a book and dove in. For a while I was content with traditional piecing although I never was one to buy kits or follow a set pattern. Even in the early days I pulled multiple traditional piecing elements together to create my own vision. I started getting a bit more adventurous when I did a quilt for a good friend. I gave her my books and told her to pick out something she like and we would use that as a starting place. I was incredibly intimidated by her choice. She picked a mosaic with no pattern what so ever, a swirling mass is all I saw. It took me forever with plenty of fabric selected, cut, placed then rejected. In the end I called it The Universe, it came out okay.
This one project started me rethinking the options. Then I found a list serve for Art Quilters. I learned that people paint and dye and use thread to paint on fabric. This simple email list serve opened my eyes to endless new possibilities. Still the voice in my head says “but I’m not talented.”
My muscles give me a great deal of problems so I cannot work for extended periods of time. Basically I get about 10 minutes active time in any given hour and still there are consequences. You might assume this is an unworkable limitation but I believe it has helped me find something new, fearlessness. My normal approach to a problem would be to practice until it is perfect then maybe move on the real thing if I think I am good enough, which I hardly ever think. But now since I get so little time to accomplish anything that I can’t waste it practicing. If I wait for perfection I would never start anything. I still practice a little and procrastinate a lot but then I step up to the table and just do it.
When I found the QuiltArt list I just read in amazement, not really thinking I could do anything like the work I was seeing. This list came into my life about the same time that the economy started tanking fortunately I got a fancy schmancy sewing machine when there was still money. Being in the construction industry, as you can imagine, business is not good. The stress of life in this economy has worsened my symptoms much faster than before. I am no longer any good at business stuff. In fact I am the opposite of good. I don’t trust my ability to manage details and cannot handle sales at all. In the last two years my focus had to change and art is the change I found.
Here is the project I am working on now. The Sky's the Limit, a couch quilt for my husband. He wants to be a race car driver when he grows up so a quilt for him obviously has to have a car, I mean duh. Not just any car either, that is a 1973 BMW 2002, the one with the round tail lights not the square lights. I’m almost done with just a bit of quilting and the binding left to finish. I would like to draw your attention to the trees. I PAINTED THOSE TREES. Painted… with paint …on fabric, me, a person that has never painted anything ever, my new found fearlessness in action. All the quilting is free motion, which is basically drawing with a sewing machine.
I don’t think that I’ll ever be a famous artist and quite frankly I would give it all up to have a functioning mind and body. But since that isn’t going to happen I guess I’ll be happy following my fearlessness to where ever it takes me and maybe someday I will be comfortable calling myself an artist.