Julie Rehmeyer's 'Through the Shadowlands'
Writer Never Give Up talks about Julie Rehmeyer's new book "Through the Shadowlands: A Science Writer's Odyssey into an Illness Science Doesn't Understand" and shares an interview with Julie ...
Discuss the article on the Forums.

How People Surprise Me... What's Yours?

Discussion in 'Lifestyle Management' started by JAXintheCity, Nov 12, 2010.

  1. JAXintheCity

    JAXintheCity

    Messages:
    97
    Likes:
    1
    Philadelphia, PA
    Last night, I needed to attend a (mandatory) cocktail dinner with my husband. As soon as we got there, we found ourselves STANDING UP in conversation with two other people. After a few minutes, my husband said, "Honey, why don't you sit down." So, I took my cue and grabbed a chair and stared up at them. All of a sudden, one of the women we were talking to - who knows I have ME/CFS - sat down TOO and said, "This way I can look at you!"

    I was really touched. It's amazing how such a small action can show so much EMPATHY and UNDERSTANDING.

    Anyways, we all have SO MANY stories of bad doctors, bad moments, stupid comments...I thought I would start a thread where people could talk about nice things healthy people have done for them, or showed an understanding you didn't expect! So, what's yours?
     
  2. Sallysblooms

    Sallysblooms P.O.T.S. now SO MUCH BETTER!

    Messages:
    1,767
    Likes:
    346
    Southern USA
    That is lovely! Since I have POTS, I can't stand for more than a few minutes so I use a wheel chair in public. My hubby pushes me. We are always surprised how wonderful people are. They open doors all the time. People have been so kind when go shopping too.

    It is no surprise, but my husband is the most wonderful. He has to do everything around the house. His dinners are gorgeous, he takes time to make such a pretty plate.

    Also, my parents, not a surprise, but they take care of me when my hubby has to go out of town. I want to get well for them mostly, they worry. I always call them when I have good news about my health.
     
  3. Dainty

    Dainty Senior Member

    Messages:
    1,544
    Likes:
    1,560
    Seattle
    Great thread!

    I currently have an excellent massage therapist. Due to extreme chemical sensitivities I must breathe through a wet towel the entire massage, and last week I decided to try my repsirator (one of those huge gas masks) for when I was face up to make it easier for her to work on my neck. She took it in stride, as if it was a perfectly normal thing. So halfway through the massage I'm struggling to put on this mask in the dark while lying on my back, and I noticed she kept her face carefully turned aside, as if to ensure that as much as possible I did not feel self-conscious about putting it on and adjusting it and everything. Probably the way she was trained, but that small gesture of giving me personal privacy so that I didn't feel like I had an audience really touched me.
     
  4. Valb626

    Valb626

    Messages:
    46
    Likes:
    18
    After giving my daughter major $hit about her illness and absences all through middle and high school (you just want attention, you're lazy, nobody believes you're actually SICK - how to put murder in a mother's heart), my daughter's friends finally recognized just how sick she is. A few years ago when they finally grew up some, she was feeling bad about not having a boyfriend on Valentine's Day, so her friends organized a party for her in her apt. They had flowers delivered, brought her chocolates and cards and stuffed animals -- and only stayed about 1/2 hour to not tire her out. She was walking on air for weeks after that because it made up for so much of the torture they'd inflicted on her growing up.
     
  5. *GG*

    *GG* Senior Member

    Messages:
    6,021
    Likes:
    4,589
    Concord, NH
    Touching, thanks for sharing this. I don't socialize much, so not many chances for kindness, everybody is busy raising their children anyways, so life goes on for them and me?
     
  6. *GG*

    *GG* Senior Member

    Messages:
    6,021
    Likes:
    4,589
    Concord, NH
    Thanks for the chuckle, This is 1 thing I am thankful for, not having MCS, that would be career ending for me, since I work in a Lab around all kinds of chemicals!

    I hope to resume my massages next year, blew thru all my money for this year! (In about the 1st 6months)
     
  7. George

    George waitin' fer rabbits

    Messages:
    851
    Likes:
    80
    South Texas
    My neighbors re-graveled my driveway so I wouldn't trip over the big rocks anymore, they are in their 60's a lovely couple. They just showed up rocks and all and now I have very nice small gravel to walk on. Made me cry.
     
  8. pictureofhealth

    pictureofhealth XMRV - L'Agent du Jour

    Messages:
    534
    Likes:
    7
    Europe
    My friend Ani did some shopping for me when it was too snowy to get my car out and I was too ill to get food in. (The local shop is very close, but I can't walk there, I need to take the car, so when there's snow, I'm really stranded). When the snow melted down a bit, she turned up with a shovel and cleared behind the car wheels for me so I could get out and be independent!! My car is my 'wheelchair'. I look really well most of the time, so tho' people know I'm ill, they don't really understand that I get stuck and need help.
    Ani just 'gets' it.
     
  9. Francelle

    Francelle Senior Member

    Messages:
    444
    Likes:
    24
    Victoria, Australia
    Altho' I don't have a specific story to offer, these stories have brought tears to my eyes. Thanks for the thread!
     
  10. zoe.a.m.

    zoe.a.m. Senior Member

    Messages:
    367
    Likes:
    27
    Olympic Peninsula, Washington
    No one is more surprised than I am that I have something to contribute here. My hope is that it what I share will not have a sad ending, but it is worth noting what happens in any given moment I guess.

    I've been getting to know someone, a regular "healthy" man a year older than me. I was well enough to go to two trivia nights here in town (been sick since unfortunately) and he is a friend of an acquaintance. He asked me out and I had to decline (wasn't well enough), but we started talking on the phone and chatting on the computer and were able to visit a few times in person. We both spoke very openly from the start about having trust issues with people (his from a divorce), and mine from being ill, though I didn't mention what it was; I think I called it "the thing no one could accept." He hasn't pushed me to say anything, but he did mention he noticed all of my pill bottles (herbs, supplements, etc.) and sort of figured there was a health issue. I decided to just end the conversation because, out of the two people I've shared this dx with, both made me pay dearly with very abusive comments and behavior. He was getting ready to leave for a trip and asked again about things and I slipped the words, "I have ME" out before I could really stop myself. I voiced my frustration with having told him and have been feeling awkward and vulnerable. He gave me a call, while on vacation, and mentioned that he'd researched ME several days before when he'd had internet access. I didn't respond terribly gracefully I'm afraid and I sat waiting for the inevitable comment, misunderstanding, rejection, but he just said that he'd like to know more and maybe I could point him in the right direction for more info. He asked me if I had much pain and said that he hadn't thought about that being a part of the "bottles" and my allusions to being tired or unable to do something. I felt scared and defensive and shocked! All I could think of was that, in ten years, not one healthy person I've known has ever said or done anything like that. I told him I didn't know how to respond because I just assumed it would all be too much. He kind of acted as though it wasn't any big deal and said that when he finds out about something, he likes to learn more about it.

    I haven't known him long or spent much time with him, but I was overwhelmed that the dirty, awful secret was out, and he didn't want to stop talking to me or getting to know me. All I can hope for is that I remember what that felt like and it's now in my memory of what is possible for someone to say and to speak honestly. I doubt he knows just how much it meant to me that he would listen, take initiative and ask further. To help put my surprise into context, this person used to work for the Coast Guard, snowboards religiously, hikes, swims, etc. etc. and I couldn't imagine experiences more different from my own. Surprisingly, the Coast Guard apparently keeps track of injuries and over time people are given labels of disability, like 10% for a back injury or 90% for several injuries sustained over the years, so I guess the concept of "disabled" isn't so foreign to someone with that background.

    In my experience, people come and go. But hopefully that feeling of being seen and conceived of as whole will remain. In my ten years of this, I've never experienced this kind of invitation to be completely who I am and not to be embarrassed. It's a strange sensation, like walking out into a parallel universe...
     
  11. *GG*

    *GG* Senior Member

    Messages:
    6,021
    Likes:
    4,589
    Concord, NH
    Hope things turn out the way you want them to Zoe, from a male, GG.
     
  12. ixchelkali

    ixchelkali Senior Member

    Messages:
    1,105
    Likes:
    274
    Long Beach, CA
    I'm a very fortunate person, because I seem to have many kindness stories. It seems like every time I'm well enough to go to a store, people are very nice about offering to reach things for me if I'm in the electric cart, or to hold the door when I have my walker. And just a few minutes ago one of my wonderful neighbors offered to cut my hair so I wouldn't have to go out to have it done. One of the hard lessons for me in having ME/CFS has been accepting help when it's offered.
     

See more popular forum discussions.

Share This Page