I developed a rare, chronic and life-threatening autoimmune disease (no, that’s not what I am proud of!)and got involved with the only and fledgling Foundation addressing this orphan disease. In a few months I built their first website, redesigned their newsletter and two years ago put together an online support group which now has members from around the world.
As this disease is very rare (30 per million tops, we aren’t sure), doctors don’t usually diagnose it quickly (if at all) and current information about treatment, meds etc., is rare as well. The website has 200 pages (50k hits per month) and is used in the classroom by at least one doctor in England and another in India. Some very important doctors in this field have said they were impressed.
I did this with little or no supervision. I worked the first two years free (thanks largely to Sassy’s financial and emotional support) before I started taking a salary of $1,250.00 per month, no benefits. That was two years ago. I have literally worked 16 hours a day, six or seven days a week, to the point that I have developed carpel tunnel syndrome. (That’s when they asked me to write down what I did to make sure I was busy during the 20 hours a week they were paying me for.) They have nearly doubled their income every year I have been here (the visibility of the Net), but they write few grant requests (two this year, both failed) because the Ex Dir says that you have to know someone to get a grant.
Now they want to supervise me and what they want me to do is often crazy. (I was told not to use the word “explained” once because the Ex Dir thinks the word means “they understood” and since there were 80 people in the room, someone probably did not understand the presentation so I shouldn’t use “explained.” I did anyway. I have objected to other lame decisions to the point where I am now called hot-headed and uncooperative. I could go on, but you’d either die laughing or vomit.)
I have complained of the lunacy to the organization’s President, but she is first cousin to the Ex Dir, so I might as well try to sell a mouse pad to Bill Gates.
It is unmeasuably rewarding to read how someone thought they were alone, that they were scared and uninformed until they found my website, newsletter and/or support group; and within weeks they are advising newbies to visit the website, read the newsletter, etc. While most have no idea I was responsible, that is entirely unimportant to me. There is still a great deal to do, but they will have to struggle on without me. The upshot is that I will be looking for work as of the first of the year (not my choice) and I doubt they will give me a positive referral.
Just being,
Myself