Author Joan Didion

I was surfing around the internet tonight reading stuff about MS when I stumbled upon the fact that American literary author Joan Didion was diagnosed with MS in the '60's. I didn't know this. She wrote a very lengthy but brilliant essay about the diagnosis and what the disease meant to her life at that time. Here is a link for anyone that wants to read it: lifewithms.com/after~1.htm She found a phrase while reading about marathon runners that she uses to describe MS fatigue that I just love and am going to borrow. "Wall of fatigue" describes perfectly what happens when the energy is gone and there are still things to do.

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  • My eyes geared up as I read this. It was my early life with MS put into words.

    Thank you Raingrrl .

  • Raingrrl Love this, thank you! On not reporting things forgotten or things too bizarre, I had no idea that some things were MS, or I was sure they were but afraid they were too weird to mention, until I read Awkward Bi**h by Marlo.

  • Thanks kdali! You just reminded me that I have that book in my stash on my tablet and haven't read it yet. I buy books for my reader when they are on sale and then sometimes forget I have them.

  • I hope you love it! She's working on another book, post babies and on Tysabri. Not that I'm stalking her...๐Ÿ˜‚

  • kdali Raingrrl

    What's this book???

  • erash

    Awkward Bi*ch by Marlo Parmalee, loved it! Most of my family has read and loved it also. amazon.com/Awkward-Bitch-My...

  • Thanks, Raingrrl. It is a long article and I have to admit I gave up before completing it. (Blame it on the MS.๐Ÿ˜‰) However, I especially like what she said about expectations and how hard it can be to ask for help. I know we all can relate to at least one (if not many) aspect of the disease she wrote about. ๐Ÿ’•

  • Hi Tutu! I actually had to copy it to my tablet so that I could read it in pieces before I could finish it. I like reading articles on my tablet better than my laptop because of my vision issues. The tablet confines it to a tighter view that doesn't have my eyes moving back and forth as much. And I can mess around with the font size more easily too.

  • Thanks, Raingrrl. I read it on my phone. I'm not sure reading it on my laptop would help. It's hard to explain, but I get tired while reading. Maybe I'm not explaining it well but it takes so much effort for me to concentrate and really grasp what I am reading that it wears me out! I can do so much more physically than I can mentally. Even conversations wear me out. I think it has to do with the effort it takes to really listen and participate that drains me. Strange how this disease affects us all so differently. ๐Ÿ’•

  • I understand totally. I love to read but can't do it as much because it tires me out and is one reason I'm applying for disability. Tech jobs require reading all day long whether its on a computer or paper. I can't do it anymore. Its partially the nystagmus in my eyes that causes trouble and the rest is other M.S. problems. I also have the same issue you do with conversations. They wear me out too. If there is too much noise, I lose the ability to differentiate between the sounds and it takes such intense concentration that I'm wiped out in no time. It doesn't help that I'm a classic introvert and I'm drained by people and conversation normally any how. My M.S. troubles just make all that worse.

  • It's nice to know I'm not alone, but I'm sorry you suffer with this as I do Raingrrl. Like you, I'm not a social butterfly-I lean toward shy-and I often 'stretch myself' when it comes to socializing. I try to do my visits and phone calls in the morning. I'm too drained in the afternoon.

    When MS first hit in 1991, I had to leave my job because I kept falling and my balance was so bad. A few years later, when my physical problems were better, I tried to go back to work (office work then). A couple months later I had to quit. I didn't realize I had mental deficits until then. I was in tears nearly every day trying to do simple tasks that once took no effort. I've done volunteer work since then, but even that has evolved as my physical and mental abilities have changed. You have a lot going on with your disability filing and move. I pray everything unfolds smoothly for you. ๐Ÿ’•

  • What you went through sounds soooo much like what I went through. Looking back and instead of being mad at myself during a presentation I realize one of the first outward signs of memory issues and MS.

    HUGS to you Tutu and Raingrrl

  • Misery loves company, jennie62. Just kidding. But yes, I think it really helps to know we're not alone and to recognize when it is MS that's made the subtle or huge changes in who we are. Like I told Raingrrl, I'm sorry you experience this too. But your speaking up also helps me know that I'm not alone. ๐Ÿ’•

  • Raingrrl

    DITTO! I tried to find the words to explain and you've done it! Too much noise, introvert, drained... nothing more I can say. You've really hit the nail on the head!

    Jennie

  • Thanks jennie62! Its hard to explain to people without M.S. though. My introvert friends sort of get it but not entirely. Having M.S. makes me a bit of an outlier even with the people who have another person in their life with M.S. Especially when I try to explain some of the more unusual symptoms I have like the noise problem. Sometimes I get that annoying reaction of "Oh...I totally understand...I don't like loud noises either." When I try to explain that its beyond just not liking loud noise...I generally give up.

  • Raingrrl

    I can't stand when I get the "Oh...I totally understand"-yuh right. like they do. I don't wish MS on anyone (not that we're bad...), but this is the only way people really understand. Hugs to you for what you've gone through. Please remember you aren't alone, I've found I find out when I come here I'm not as alone as I thought. : ) (sideways smile-lol)

  • OMG! I thought it was just me! I should know by now it's the MS! Thanks for saying something Tutu

  • Raingrrl I'm so happy you mentioned this! I used to be quite a bookworm, but because I have trouble with tiny fonts (or they just seem that way) and having to move my eyes back n forth. I'm going to see (pun not intended-lol) if this works for me. Thanks for mentioning it!

    Jennie

  • Thanks for posting this Raingrrl very good article.

  • Raingrrl i really like her writing and have bookmarked the essay to read later. I also didn't know she had MS.

    As a former marathon runner, hitting the wall is a good analogy, but there's something less frustrating about fatigue related to 10, 15, 26 miles of running vs fatigue after grocery shopping or vacuuming my family room.

    The former feels like more of an accomplishment. The latter feels more like defeat ๐Ÿ™

  • Amen to that!

  • You're right, erash. That's when I change my goals: Today I will dust and IF I can start vacuuming, that will be a bonus.

    Grocery shopping (after writing out my list a couple times to make sure my list items correspond with the aisles in the store-yes, it's gotten that bad!) and putting up the groceries is a major item on my to-do list these days. I'd say you should feel great accomplishment in completing the goals you make today. It's really hard to compare them to the goals we set for who we were yesterday. Looking back can bring me down and I don't like to stay there too long. I heard this great quote recently:

    If you are depressed you are living in the past.

    If you are anxious you are living in the future.

    If you are at peace you are living in the present.

    Lao Tzu

    I've spent the last few days dwelling on the past. Today I hope to keep focused on the present. ๐Ÿ’ž

  • Lao Tzu quotes really say it all! Thanks for sharing those wonderful words with us!

  • I agree erash . It IS a good analogy but you are right about accomplishment vs defeat. Tutu Love the quote!

  • Raingrrl

    Do you know when she wrote this? I wonder if her perspectives changed over time? And possibly with disease progression?

  • @erash...It seems she was diagnosed in the late '60s and wrote this piece as part of "The White Album" published in 1979. I also wonder if her perspectives changed over time especially since its been almost 50 years since her diagnosis. She also endured much personal tragedy in recent years so that could have colored her perspective too.

  • Raingrrl interesting that MS didn't make it into her accounts of her daughter's illness or her husbands death...at least as I recall. So perhaps MS is still an aside issue for her.

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