Thursday, March 25, 2010

Another Cure!

I had a lovely phone conversation with my cousin today. I love my cousin Karen. She is only a year younger than me and our mothers are cousins and pretty close. Although we grew up near each other some of the time when we were kids, we weren't very close until we reached adulthood and both lived with my grandfather in Lake Tahoe for a summer. We had a blast and since then we've faded in and out of each other's lives but always fall back into our comfortable relationship when we come together again. She's now living on the Cape and the kids and I are going down to spend Easter with her and her family. I can't wait.

Karen is not someone who pities me, ever, which I really, really appreciate. She did, however, tell me today that her husband had found and saved an article about a cure for MS and she wanted me to call him right away to have him give me all the details.

Karen is a very bright woman. She is a talented painter, a great mom, and has business savvy, too, having partnered with her husband to run a successful restaurant in Hawaii and several World's Fair concession operations around the world.

Does she really think that there has been a cure for MS that has come in "under the wire" and that I would not have heard anything about it if her husband did not happen upon this article?

I know...I'm being harsh and probably less than grateful for Karen's obvious interest in my well-being. But I wonder: Is it just me? Does anyone else get a little edgy when well-meaning friends and family pass along "cures" and new treatments? Are any of my fellow MSers not regularly reading the news and various MS publications and websites in the hopes of hearing promising research results? If we see a neurologist at an MS Center or other research hospital, don't we read all the magazines and flyers in their waiting rooms? For those of us who are fortunate enough to have health insurance, don't we go to those offices every six months in the hopes of hearing the latest news and information about how to treat and even cure our MS?  How many of us particuapting in National MS Society events to raise money to find a cure and then we get on their mailing lists to read still more research results?

Is it just me?


  1. julie, dam, i feel your pain SO much...but remember, we are adults just bite your tongue, nod, & smile (grit your teeth if you hafta?). i've thought about this a lot, & unbelievably, people just wish so bad that they could FIX you. most of the time they have the mental thing going on that's almost 'survivor's guilt', you there but for the grace of God...hahaha...well, no, i'm not laughing, but...anyway, sorry for my diatribe here, but it's nice to meet you! is it ok if i link you on my blog?

  2. Julie,

    Not often have I had this come up, but this week it did. My mom always sends me links from things--typically I've heard of them, but my dad called me after hearing a show on NPR. It was about hookworm and MS....curing it that is. Maybe they were both listening to the same show??

    Hang in there!

  3. OMG. When I was newly diagnosed, back in the paleolithic, I would get these 'recommendations' quite often. I learned to smile and say thanks for thinking of me, and I'll run this by my doc at my next visit. The subject was always dropped and never brought up again - bu either of us. Believe me, I feel your pain.

  4. All in all, people just want to be helpful and to let you know they are thinking about you.

    I had one friend who called me every time she saw something on BBC news about other countries discovering "cures" for MS or treatments for MS.

    If you've never watched BBC, it is amazing what we never hear about in the United States because our news is so filtered - especially about wars, health care, etc.

    She said she thought with all the information out there that I might have missed it.

    I let her know in very pleasant manner that there was not really all that much information "out there" and that I get medical periodical subscriptions so that I know about things before they even hit the news. I thanked her for thinking of me and she hugged me telling me she just wanted me to know how much she cared.

    And I think that is the bottom line.

    I don't think people mean to insult our intelligence; they just want to let us know in their own way that they care about us.

    Take care,

  5. I do get them sometimes, but I try to remember they are well-meaning.

    I just WISH for a real one. I mean a real, honest to God cure. Then anyone that wants can sent me the info!!! :)

  6. You are all, of course, quite correct. My cousin loves me very much and just wants to help. And please know that I said thank you very much and did not express any of what I wrote here to her directly. This is just the place where I CAN say all that and I know I will feel better.

  7. Lets hope she doesn't blog also without telling you or have in her reader MS blogs such as yours in case her love for you means she looks for things to help by reading blogs associated with your illness otherwise her feelings might be quite hurt.

    I understand how you feel and have had similar experiences - suffering from a rare connective tissue disorder means I get a fair few ideas on how I could 'cure it'. I just make sure if I am going to say something negative that is personal on my blog, I prefer annonyimity if its about a friend or relation. To save blushes all round.

    My guess is in their wish and love for you that there was a cure they got all over the top and got a bit carried away.

    Wouldn't it be just great though if the thing they had found turned out in time to be 'the cure'. One can but hope.

  8. She does not email or text much less blog. :-)

    I write from the same school of thought as Natalie Goldberg (Wild Mind and Writing Down the Bones) and Anne Lamott (Bird by Bird and Operating Instructions) so, although I try not to be intentionally hurtful, I also try not to censor myself. I can't get to the stuff that really matters--the sometimes gritty, really REAL stuff if I focus too much on what others think. Truly. Sorry if that strikes some as selfish.