Chronically Employed: From TV to Art, Ted Doesn’t Let Gaucher’s Disease Get in His Way
June 17, 2013
Ted Meyer, 55, Los Angeles
GG | RARE: What sort of job did you have before getting sick?
Meyer: Right out of college I went into TV art direction and was the art director at two different network stations over a four year period.
GG: What is your disease/disability, and how does it specifically stop you from working a full-time job outside of home?
Meyer: I have an enzyme deficiency called Gaucher disease. It is sort of an odd illness. No two people have exactly the same symptoms. In my case, there was severe bone damage requiring many childhood hospital stays. There were also nosebleeds, removal of my spleen, broken bones and hip replacements. Also, fatigue left me constantly feeling as if I should go to sleep anytime and anywhere. That is what really got in the way of working a 9-5, even more so than the bone pain. When you are so tired that you just have to take a nap, nothing else will really do. In my case, it is a painful sort of tired. I can’t really explain it. It is hard to tell your boss that you are exhausted and need to take a nap on a regular basis. Naps really do not fit in at TV station where news graphics have to be made ASAP for breaking events.
GG: How does the job you created allow you to work from home and on your own terms?
Meyer: I’m lucky that I can still work hard but I need to do it on my own time schedule. Some days I need sleep. Some days I can work for hours.
When I left TV, I started a t-shirt company and printed shirts with my own designs. At one point, they were in about 400 stores. Then my hips gave out from all the repeated movements, and I closed the company down and got a new set of hips. After my recovery, I started a design studio and I’ve been doing design work for about 20 years.
About four years ago, I stared getting offers to speak with patient and medical groups about the artwork I do and the exhibits I curate that focus on medical issues. Now I am in the process of booking more dates, and with any luck this will turn into a full-time career and replace the design work.
GG: Do you still encounter any challenges with your new profession because of your illness? How did you work around it?
Meyer: Being in front of the computer can be hard on my back. My bone issues have moved into a few of my vertebras. I also need to get enzyme replacement every two weeks. I used to try to keep that hidden from my clients. Now if they want to meet while I am scheduled for an IV treatment, I explain to them what is going on and if they still want to meet they know ahead of time that I will have a needle in my arm. So far, not a single client has canceled an appointment.
GG: How do you handle necessary benefits like insurance that comes with normal 9-5 jobs? Do you use a spouse’s insurance, a parent’s, or do you use government funding?
Meyer: I’ve written a few children’s books. I have been lucky and got insurance through a writers group. The cost is over $3400 a month. I have grants that help cover some of the costs. Over the years, I have been in and out of several policies. I’ve been dropped and hit lifetime caps. It is not easy. I’m hoping Obamacare will make some of the insurance issues a bit easier.
GG: What is an average day like for you at your new job?
Meyer: I’m lucky. Every day for me is different. Some days I design; sometimes I fly to another city to give a talk. Then there is my work as an Artist in Residence at UCLA Med School. I just try not to overbook, so I do not get too tired.
GG: What advice do you have for other patients looking to start a new kind of job that fits around their illness?
Meyer: I think it is hard to advise anyone else. Everyone has different abilities and different levels of acceptance for pain and mobility. I would say to know your physical limitations. If there is something you cannot do, don’t tell anyone that you can do it. Then they won’t feel you are falling behind because you are frail.
I learned a long time ago to never go into specifics about my illness unless someone asks directly. People might ask how I am feeling when I am tired or run down and showing outward signs of fatigue, but they do not really want to know the answer. It is always best to just say, “I’m fine.”
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