Guest guest Posted October 26, 2005 Report Share Posted October 26, 2005 > THere are many but lies' biggest question is, " How > do you do it and cope with the severe fatigue/headaches? " I guess I'll chime in (surprise!), I just finished my Ph.D. in May and got a Fellowship that I am starting next month (yay!). I also have authored five papers, one published, two near publication, and two near submitting. So that's a LOT of writing, including editing, making figures, etc. The Ph.D. was around 300 pages, and certainly MS Word is a great thing compared to a typewriter! My basic tip that I wanted to share is that support from family and/or friends is essential. Also, my boss knew about my condition (I don't use a wheelchair or walker out, only a walker or cane at home sometimes, so it's not obvious), and allowed me to work from home. For my new job, I should be able to work from home intermittently as needed. I also notified the school about my disability, and worked with their disability coordinator. Your daughters might want to check out this article in Quest: http://www.mdausa.org/publications/Quest/q124tracee_lydia_garner.cfm I think there may be other articles in Quest magazine on being a writer with a disability. Take care, RH Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 27, 2005 Report Share Posted October 27, 2005 Regarding headaches while writing: Does your daughter use a desktop computer with a crt monitor? If so, my computer-guru fiance says that people usually set the refresh rate of the screen too low which causes eyestrain and headaches even in people without mito. That's my only thought on the headache subject. However, my trouble with writing, which may or may not apply to your daughter, is that I can't sit up for long. I have solved the problem by bringing my laptop to bed. (And laptops don't have the refresh rate issue). I lie down with a breakfast tray over me so the laptop doesn't put pressure on my belly. Also, I can see the computer better when it's up a bit. My fiance has rigged it so that I have a high speed internet line that reaches into my bedroom so I can even use the internet and email in bed, too. Good luck to her! --Shayna > > > THere are many but lies' biggest question is, " How > > do you do it and cope with the severe fatigue/headaches? " > > I guess I'll chime in (surprise!), I just finished my Ph.D. in May > and got a Fellowship that I am starting next month (yay!). I also > have authored five papers, one published, two near publication, and > two near submitting. So that's a LOT of writing, including editing, > making figures, etc. > > The Ph.D. was around 300 pages, and certainly MS Word is a great > thing compared to a typewriter! My basic tip that I wanted to share > is that support from family and/or friends is essential. Also, my > boss knew about my condition (I don't use a wheelchair or walker out, > only a walker or cane at home sometimes, so it's not obvious), and > allowed me to work from home. For my new job, I should be able to > work from home intermittently as needed. > > I also notified the school about my disability, and worked with their > disability coordinator. > > Your daughters might want to check out this article in Quest: > > http://www.mdausa.org/publications/Quest/q124tracee_lydia_garner.cfm > > I think there may be other articles in Quest magazine on being a > writer with a disability. > > Take care, > RH > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 27, 2005 Report Share Posted October 27, 2005 Joanne, Just wanted to encourage your daughters. As a person who's been in both the disability community and the writing community for many years, I can tell you that there are many disabled writers. We have set up many custom adaptations and shortcuts on my computer, courtesy of my programmer hubby and my computer engineer son, including speech-activated software which is the only way I can do much typing now. I use Dragon Naturally Speaking 8.0 Professional. It is pricey but worth it, IMO. A lot of days I can't sit up that long either, but I recently got another desk chair---wonderful investment---and with that chair I fatigue less and can sit up longer. Some writers use dictation and have it transcribed, but for me the creative process just does not work the same if I cannot SEE the words on paper or on screen. It would be like trying to do a jigsaw puzzle in my mind. One best selling novelist, A. Manette Ansay, can only write for half hour periods at a time. She has learned to adapt her creative process and uses the rest breaks to " think " ahead so she is primed and ready after the rest period. This doesn't work for me, however, because I always get my best ideas while lying down resting! And of course, I have to get them down newborn or they will disappear into mito fog and never surface again. So to achieve genuinely uninterrupted rest, I have to try to turn off the writing switch and not allow myself to even think, then turn it back on later. This is difficult because the creative process is all-consuming and not easy to turn off and on. Most serious writers would say its impossible to produce anything under these circumstances, but it can be done. Here's a few excerpts from comments I made in an interview about 10 years ago. (Most of the questions were NOT about disability, thank goodness, just writing in general.) -- How does CPT presently affect you as a writer? " CPT makes for an inherent tension between what I want to do as a writer and what I am able to do. As a result, my start-stop progress down the page encourages a tight style because I think a lot between sentences. First drafts tend to be so skeletal that editing often means adding, not subtracting. No doubt the language loses some spontaneity. Many times have wondered why what might come in a free-writing spill. " [This was before I was using voice-activated software.] -- What has writing meant to you since it has become the art form that is essentially replaced your piano playing? " I inhale music. I listen to CDs the way most people breathe. Given this passion, it's not surprising that when I lost my piano hands, I somehow found another way to make music. It's the same gift refocused. In contrast to the limitations of illness, writing offers a redemptive freedom. There is something so spacious about artistic expression in general and writing in particular. My work is out in the world, meeting people and making new friends, even though I'm not. " -- What is your motivation for writing? " I write because it feels like flying. That's one of many possible answers. I write because I surprise myself. I write because this is the task God has given me. I write because some days when I'm stumbling into walls and door frames it's nice to know that somewhere inside of me there is still a little grace. " PS--- As of 2000, I was forced to retire from writing, but this year, courtesy of various treatments, I am actually doing some real writing again. Email, of course, is not real writing. Email is sort of like sight-reading a Mozart Sonata. Real writing is more like performing that same Sonata after a year of daily, grueling practice. :-) RH, Congratulations on the fellowship! Well deserved, I'm sure. Barbara > I guess I'll chime in (surprise!), I just finished my Ph.D. in May > and got a Fellowship that I am starting next month (yay!). I also > have authored five papers, one published, two near publication, and > two near submitting. So that's a LOT of writing, including editing, > making figures, etc. > > The Ph.D. was around 300 pages, and certainly MS Word is a great > thing compared to a typewriter! My basic tip that I wanted to share > is that support from family and/or friends is essential. Also, my > boss knew about my condition (I don't use a wheelchair or walker out, > only a walker or cane at home sometimes, so it's not obvious), and > allowed me to work from home. For my new job, I should be able to > work from home intermittently as needed. > > I also notified the school about my disability, and worked with their > disability coordinator. > > Your daughters might want to check out this article in Quest: > > http://www.mdausa.org/publications/Quest/q124tracee_lydia_garner.cfm > > I think there may be other articles in Quest magazine on being a > writer with a disability. > > Take care, > RH Quote Link to comment Share on other sites More sharing options...
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