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Oh, Yeah?

By Justine Dorton

Everyone knows how great my summer has been, eh? The most fascinating part of this whole thing has been the people I’ve encountered. Indulge me; let me tell you all about them. Pull up a chair.

The first group, and the one I love the very most, are the people (women, mostly) who come up to me in the grocery store or the library or wherever I am, and just embrace me. Some tell me I look beautiful without any hair. Some just silently hold my hand and smile. Some ask about what happened. Some even share their own stories with me. All of them are positively brimming with positive energy and love. They look as if they’d cry with you right there on the spot. I’ve met many of these women in the last couple of weeks (since I’ve started leaving the house again). Most of them probably have years of surviving behind them. I’m actually sad for my hair to grow because then I won’t know how to find these women anymore. These women are women who have survived, and I don’t want to lose my association with them.

Another group are all the people I knew I could count on (OK, I love them the very most, too). The women and men in my life who, even if not bosom buddies, dropped everything to help me, didn’t feel uncomfortable by the physical trials of early on, and cheered me through my slow weeks of recovery. My house is still stuffed to full with freezer meals, homemade breads and jams, gifts, movies, books, and notes filled with love.

But as we move on, what do I do with the group of people that won’t look at me? Even at church, there are some who avert their eyes from me. I know they’re just uncomfortable. They probably don’t know what to say. My shiny head makes them uneasy, as if I were confronting them with their own mortality or something. I feel angry and hurt. I know it’s probably irrational to feel that way. I still do. There are a surprising number of people that fall into this group, and are people I never thought would react that way. I imagine it will ebb away as I start to look more normal again. I’m surprised how much I miss smiling and being smiled at as I walk through the store.

And then there are the others. The people with a topper. For whatever reason, my injury has threatened them. I’ve been lately assaulted with many tales of woe that are more tragic/more painful/more expensive/more morose/WORSE than mine. In all honesty, my accident was silly and thankfully behind me. I have never made any sort of claim to the misery crown, and I’d really like to forget it ever happened. I seriously hope I am not sending out some sort of vibe that says, “My life is SOOO much worse than yours!!”

I was actually told last week by a woman, “You look completely recovered! It must not have been as serious as it was made out to be! I, on the other hand, have so many things wrong with me. I’m in constant pain, always medicated, can’t cook for myself, yadda, yadda, yadda for 10 more minutes…” And here she was, all dolled up for church, strolling around the room working the circuit. I’ve been confronted with so many one-ups that I am totally out of words. What do you say when someone lifts their shirt to show you their scar, which “is clearly at least two inches longer” than mine? How does one respond when assaulted with a litany of physical maladies that should likely render the speaker dead?

I am out of words. I don’t want to win this competition. I didn’t even know I was being forced to compete. I find myself pretending to be better and stronger than I am. For this group, my hair can’t grow fast enough to cover the scar and return me to the mainstream of normative behavior. I’m confronted with the question of why some do this. Are they looking for attention? Are people just trying to connect with me in some strange way? Could someone just be trying to say, “See! We can relate to each other! I’ve been there!”

I see how some could be trying. I have heard the harrowing stories from women in the first group and, rather than bristling, felt love and compassion and a need to give hugs. Are these others just misplaced attempts to be a part of group #1? I’m trying to be sympathetic and not just believe that the world has gone mad.

Cuz’ if one more person tells me, “Well, that’s nothing! You should see this!”…

About Justine Dorton

Justine is a mother to five children, and has a husband lodged somewhere (probably in the den). She is not very fond of speaking of herself in third person.

22 thoughts on “Oh, Yeah?”

  1. On the toppers – maybe it's just their way of reassuring themselves that God loves them too – enough to give them the same miracle of healing.

    I wonder if the 2nd group is trying to respect your privacy…it's hard to know what people are thinking. Maybe it's survivor guilt, I don't know. But I do wish I was brave enough to a member of the first group, I really admire them.

  2. I too love the "women who have survived" (it doesn't matter what). It's amazing how sometimes they turn up right under you nose, sometimes among people you've known for years, but who've kept their stories to themselves.

    The non-lookers often just don't know what to say or how to act or they feel guilty because they haven't been busting down your door. They are uncomfortable so they try to avoid. They're missing out Justine, because you are so beautiful!

    And I know the toppers too. Misplaced is a good word. They often don't mean what they say, like the friend of mine who was horrified when I ranted about a sister in our ward asking a new mother of twins why we were still bringing meals in to her. I later learned it was she was the one who had said it, but she hadn't even realized what she had said. She is the same person who, years later, asked me why I was still on crutches just days after they cut away 1/3 of my patellar tendon to reconstruct a new ACL in my right knee, rendering my quad muscle useless and preventing me from being able to walk unassisted (don't worry–my scar was nothing compared to yours *wink*). She is a friend who has a good heart and has no idea her remarks were well, unsympathetic at best.

    Some of them do mean well and believe they are being empathetic. Some crave attention, but have no idea how they come across. Some are genuinely trying to make you feel better as in "I survived this thing much worse, you can too."

    I can almost hear a Mormon version of Miss Manners encouraging you to respond "Oh dear. Shall I contact your visiting teachers? Perhaps we should be bringing meals into you!"

  3. First, I'm so sorry for all that you've been through. What a hard, hard summer! I've been there with the toppers too. Once I was discussing my son's seizure medications with someone whose son had seizures as well, and we found out they were both on one of the same medications. He said, "Oh, your son is on the 150's? Well, MY son is on the 300's!" I wanted to say, "You win!" I agree with Dalene that the toppers crave attention. Someone very close to me LOVES to detail all of their medical problems when I mention my son's to them, and I really think it's because they want attention.

    I've also been there with the people who avoid looking at you. When we would bring our son to church, wheelchair, suction pump, and feeding pump in tow, it was interesting to see the lengths that people would go to to avoid us and him. I think it's because they are uncomfortable, but it's hard on me.

    These experiences have taught me that I want to be one of those people in the first two groups you describe. If I can't empathize with someone who is surviving the hard things that I have, I want to be one of the ones who stuffs peoples' homes with love, dinners and cookies.

  4. I am very sorry to hear of what you've gone through and are going through still. Hopefully all of that will subside sooner than later and you can no longer have to deal with this!

    I don't know if you'd want to take this tactic, but what I would do is what my grandmother and Dr. Joy Brown would suggest: "That's nice, dear." Just smile and listen and be glad when they're done. I really don't know if there's another way to respond to them that won't leave you feeling worse off. What they're doing is indeed very rude and they should know better. However, there's nothing that you can say or do that will make them stop doing this (at least that I can think of) that won't leave someone feeing miffed. So, just "kill 'em with kindness." Listen to their woes, you needn't feed into them 'cause that's clearly what they want, but if you simply smile and move on, it's over with and nothing negative was exchanged. For whatever reason, they're stuck in kid-world – you know how sometimes kids will compare battle wounds; how rough and tough their dad is compared to the other guy's, how much better their mom's cookies are than the other guy's? Well, at least to me, that's what these people are doing, but only it's not cute or funny – it's flat-out rude. Like I was saying though, I don't think that there's anything constructive that can be said or done that will make them see the error of their ways. Thus, I think the most peaceful path would be the above: listen, smile, be glad that they've finally stopped talking, and enjoy the rest of your day.

    Personally, I do know how this can be. My mother and father passed away when I was 9 and 11 respectively and I've simply stopped explaining that to people when they ask about my parents, etc. because I many times would get responses like, "Oh really, my father died when I was THREE, I don't have ANY memories of him, you're lucky you got to even SEE your father! / BOTH my parents died in a flaming wreck" etc, etc, etc,. While this may be true, I never thought it very necessary or kind to say. 🙂 This is different than people coming up to you randomly, but I propose that the same tactic can be applied. Good luck!

  5. I'm pretty sure that at one time or another I have been in every group that you describe. But the nice thing about bad times is that they give you unbelievable empathy and a clearer picture of humanity (the good and the bad).
    I hate the toppers too. Although my husband is one. No matter how hard my day has been or how sick I feel, he's had a harder day or been sicker. All I want is a little sympathy, not a contest! Whenever I meet a topper I tempted to say, "wow, I'm so glad I'm not you." I'm too nice to try it, but it sounds effective. You have my permission to use it (although you're much nicer than I am, so I doubt you will.)

  6. Mrs. Organic, maybe you're right and people are just trying not to pry or seem nosy. It sure does feel isolating, though!

    And Dalene, your scars totally rock, babe! And I think I'm going to try setting their Visiting Teachers on them when I start to hear these stories.

    Andrea, this experience is indeed teaching me just how much I want to be in one of the first two groups. As hard as it is to be served by others, it has been a tremendous blessing that has allowed me to grow in totally unexpected ways. And just as an aside, you've been in my prayers this week.

    Maddison, even given my experiences of late, I am still totally in shock that people would attempt to compete with you over the issue of the death of your parents! I'm impressed that you kept your composure through that time. Does it still ever happen? I wonder if happens even more now as people feel they can speak more boldly about it because it was "so long ago."

    Jennie, I think I've been in all of those groups, too, at some point. But after this experience, no longer. I feel strangely emboldened to go hug suffering women. And I suppose that's probably all of us, isn't it? So let's all go hug someone.

  7. Thanks for this–it's very timely for me. I'm teaching a RS lesson tomorrow, and this is the kind of thing I've felt like I needed to touch on. We women really need to give each other a hug, not a judgment or comparison.

  8. Justine, I loved how you captured the essence of so many "groups." Remember when I broke my leg in college? I had to be in a wheelchair for awhile. In some ways I was so sorry when I moved to crutches after a month or so. All of the sudden I was in a club. I know it was more me–suddenly I didn't feel awkward about approaching people in wheelchairs and talking about aerodynamics, wheels, bumps, the best "ways" into buildings and etc.

    But, like you said, there was another group of people who couldn't look at me. Yikes! Girl in a wheelchair! That ceased as soon as I was on crutches. Crutches were cool–like you probably broke your leg skiing or rock climbing (ha ha).

    It's hard to know what to say to people who can't even look at you.

  9. Justine, I love your attitude about your association with other women who survive! And so sad about those other two groups. I think the world does go a little mad at times.

    Good luck the next time somebody says "oh that's nothing" . . . because sure enough, somebody is going to say it.

    I love you, Justine! And you do look smashing with little or no hair. Not too many could go through this with such style.

  10. A few years ago I went to Sea World and, for the first time, got pushed around the theme park in a wheelchair. It was an unpleasant surprise to me how many peoples' eyes slid right past me when I was in the wheelchair: even people I'd smile or wave at would look right through me. It was both disconcerting and depressing – and yet, on the flip side, I myself have been uncomfortable when I see someone who is drastically different or visibly disabled. After my own wheelchair experiences I try hard to make eye contact, to smile and chat and connect with the people around me who are struggling with their own medical nightmare – but sometimes I, too, get caught in the embarrassment trap. It's a pretty humbling thing.

    As for the toppers: this is a trend I am so deeply annoyed by, and yet far more often than I'd like, I find those tendencies in myself. As a person who struggles with "invisible" chronic illness, I go through my life both hoping that people won't judge me by my physical limitations, and hoping that they will give me credit for the very real trials I go through. (I often get the "huh? You look just fine!" response, which is frustrating and at times even dangerous.) And so, while I usually try not to be a conversation "topper," I do sometimes find those feelings in my own heart: when other people around me are undergoing tribulations that are highly visible, I find myself wanting to raise my hand and say "Hey, what about me? I'm in a lot of pain too!"

    I'm not sure what the solution is, except (of course) to continue to get on my knees and BEG for compassion and the ability to, well, get over myself!

  11. Justine – I've been wondering the same thing; if people feel free to say such things since it was 'so long ago.' I was pretty shocked too. When it happened and I was a child, people were really sympathetic and kind. But somehow once I became an adult it all seemed to change into some sort of morbid competition.

    Anyway, good luck with all this! What a pain in the neck to even have to deal with on top of just having to deal with the original situation!

  12. I think People try to put circumstances different than their own into context they can understand. What gets said after they determine a context is then anyone guess.

    It sounds like many of the "toppers" may (unfortunately?) identify with you. I'm not sure if they think they can one up you in every case or by the very fact that you have had these things happen recently you'll understand what they're going through. And they need someone to understand. They want someone to listen. I also REALLY like Dalene's response.

    Everyone is so individual with how they deal with the emotional side of stress. Like the fact that I _didn't_ want to be hugged for a very very long time. I never initiated it. And interestingly enough, someone ended up wondering why they felt I didn't want a hug and then getting miffed at me because she wanted to give me one 🙂 _Now_ I don't mind hugs at all.

    But no one would really know that by just looking at me. More than likely they also have no idea the thoughts I have to deal with and work through in response to the things they say. Because what will seem ridiculous when someone hears it made perfect sense to the person who said it. 🙂

    I also became very private (I know, the internet is really private!) so I might be one of the people who would give you space. Or I would do something that you wouldn't know I'd done.

    I'm really glad that at this point I have the luxury of distance on the extraordinary events in my life. I'm not even in the same ward(s) I was in when they occured, so unless I bring them up, most have no idea. To them, we're just another family with teenagers.

    Give people time, they'll give you that luxury again, though I don't know how long it will take 😉

  13. PS – Can I add that when I post on the internet I have another luxury – taking time to choose my words. Sometimes I don't even post if it never comes together, but in person I know I've said some things I wish I hadn't. (It made perfect sense at the time).

  14. I quite know for certain that I have at some point in my life engaged in the race for the bottom of the barrel. I always berate myself afterwards, and now after this experience, I think it's been beaten out of me.

  15. Thank you for the reminder that people with scars are still people. Just because someone has been through something difficult doesn't make them a saint. On the flip side there are those who haven't been through horrors and are saints.
    I will say it only takes one mean person in a wheelchair to make you wary. I offered help to someone at the library, only to be met with, "I can do it myself!" I think twice before offering help now. You never know what experiences people have been through to create their reactions.
    Another take on the "toppers" – perhaps they are looking for comradarie also, they're just not very good at communicating it. We all have trials, medical and otherwise – maybe we wonder if you have a secret to getting through it that we could really use. I do anyway.

  16. About the toppers. Recently, I watched a home video of my son at age two and a half. It made me cry to see him unable to talk. I cried for him and for myself, and the hard road of trying to help him and worrying about him. The whole "experience" is behind me, but it is still a part of me.
    It is an invisible part of me. People who know me now weren't there then. They don't know.
    Perhaps your toppers still carry the weight of their lifechanging struggles. They still need to share them, talk about them, process them, accept them, learn from them. But there is no one who wants to listen. We all need someone to listen.

  17. I don't know what to say when I meet someone who does not get around the same way I do, other than I polite "hello". It's hard for me to talk to anybody I don't know in the first place. I was always taught, "don't stare, don't point, don't make fun of someone different from yourself" so that's what I try to follow. I've heard you shouldn't offer help unless it is asked for, so unless someone if obviously struggling, I just go on as if there was nothing different about the person. I probably come off as one of those who look past those who are in wheelchairs or who use other devices to get along. I guess I just don't know how to show genuine interest and compassion without making someone feel pitied. I don't want to demean anyone, especially with unwanted pity.

  18. I think the ones who avoid you just don't know what to say. They don't want to hurt you in any way. They don't want to top you. They are afraid that anything they say will be wrong. They can't even say they understand because they don't, they haven't been through it.

    And they're afraid if they don't talk about it, it will be like the elephant in the room.

    So it's easier to avoid you.

    It's not lack of compassion that keeps them away. It's that they have compassion that they don't know how to express properly.

  19. Justine, thanks for this. It's so interesting how our struggles can bring all sorts out of the woodwork. I love how trials can bond people, but it's hard when they create rifts and competition.

    I tend to agree with JKS about the toppers, though. I suspect much of that competition thing is often rooted in pain and loneliness and a need for sympathy/empathy. Sometimes it's probably something else, like insecurity or other things, too.

    This post has caused me some self-reflection. I'm even going back to our interactions at the park, and ask, 'Is it I?' Sometimes in sharing personal experiences, we might just say it wrong…I sure hope I didn't! 🙂

  20. I have loved hearing stories from so many people, and I can't exactly pinpoint the moment a heartfelt story becomes a competition of pain. That' probably part of the problem. And I do recognize that alot of this comes from isolation and loneliness. We all want to feel comforted and loved. I just wish it didn't feel so competitive and vindictive.

    Too often, we vault our own pain and loneliness by minimizing or demeaning the suffering of others. That's the part I don't like. But I love talking to you, m&m, so fear not, dear.

  21. Justine,

    Somehow I missed the news about your accident (so sorry either way). I loved the way you described the groups. I too have been in all three groups, but thankfully have enough life experience behind me to try really hard just to be in the first one.

    It sounds like you have the "health" version of our experiences with our adopted children (who are a different race than us). You would not believe the horror stories I hear about adoption–(HELLO!! My kids are right here!!) or the detailed and often insulting questions and assumptions about their other moms/families. Then again, maybe you would. I guess there will always be people who shock us.

    Hope you are doing better and thanks for this timely reminder…


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