Fatigue reply 1

Sent 1/19/12:

Hi, Rachel-

The first question is easy:  Arlington, MA

The second is so hard that I spent all evening on it and finally gave up!  Basically:  I've rarely in my life worked a 9-5  "full-time" job... and my "full-time" jobs (what artists call "day jobs") were boring and ill-paying.  My *career* is a whole other long story:  you can't make a successful career as an opera singer/stage director/teacher when you didn't learn piano as a child and didn't study singing 'til your 20s... I was doomed to failure from the start.  (I'll tell you more if you're patient.)

Third: I can send you more on the topic later, but the short story is, once I finally accepted the fact that I can't run rehearsals or work much on music to sing (no stamina, unable to drive distances to rehearse), or edit/publish an international newsletter (no stamina), I looked at the part-time "day job" I'd managed to snag (great luck! - long story) - and it's a really good one!  I do creative things, I'm respected, I get full benefits for my part-time hours... and they recognize & are supportive with my health limitations.  When my legs gave out, they were having trouble finding office space for me anyway, while my job is almost entirely on-line (I build web pages), so letting me telecommute is a win-win.

I work part-time/flex-time. I can complete my work when I'm able (e.g. 3 AM if I can't sleep!), as long as I meet any deadline for a general project. I'm not allowed to work more than 17.5 hrs/week for my main job (although I have a couple of more flexible side-jobs that are administered through the main office), so I do my best to get my tasks done within the hours I have... but if I go over, I have required vacation time the next week!

Fourth: This is a complicated spin-off.  I had a "day-job" for the university in a different department, which was okay while it was part-time... but when they decided they needed a full-timer in the position, I tried, and got sick.  I thought I'd never work for the U. again.  Taking advantage of things I'd learned in that job, I took a course in web design - and found myself back at the U in a different department, in my current p/t flex-time job.  MS fatigue was on the table from the start; telecommuting & flex-time were selling points on both sides... although once I'd been working for a while, someone found a Federal law that said people in my position have to work on-site under supervision - a real problem for everyone!  So my leg problem actually helped everyone:  they were glad to send me home again, with help from the U's disabilities office.

Change fields?  I can't do all the musical /theatrical things I used to do, and I miss them... but I manage to do a bit (for instance, read about my annual Music to Cure MS concert ).  It's hard when people ask me to direct shows and I have to say no; it's hard when people ask me to sing things I'd love to sing and I don't trust my ability to work long enough to "get it into my voice" (singing is really a sport, and singers are athletes... and this is an athlete who can't work out as she used to).  But the web-design "field" was growing along-side the music/theater "field", and they overlap... so I still do web pages for opera (for instance, see http://longwoodopera.org ) and for my abandoned newsletter (see http://negass.org , a site I designed & still maintain, even though others edit the newsletter).  And I still have some voice students... who, again, overlap with other parts of my life.  I really can't answer the "spinoff" question... my life has been a series of spinoffs, or a series of changes, and MS is just one more thing in the mix.

Fifth: Advice?  Stay flexible, enjoy whatever good comes your way from any direction, reject anything that causes a problem...  Here's something a friend sent me that I have to remember all the time:
http://www.leedscarroll.com/Misc/images/resisting-a-rest.jpg
Rest when you need to!

Taking my own advice, I'm going to log off now; I'll send you more later!

- Marion

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