Sunday, April 7, 2013

comparatively speaking

  You're all about to get annoyed with me. I gotta write this, though. No apologetics.

Comparison is one of the worst things people can do to themselves. Even knowing this, I find myself in the middle of such a tearing-me-apart kind of comparison with someone else and her own [horrific] trauma, it is literally just defeating me.

I follow a blog written by a woman who was involved in a plane crash five years ago. Someone I know introduced me to her blog, because that person thought it would be good for me to connect with another person dealing with skin grafts (at the time I wrote directly to her, but didn't get an answer).

The woman who had the plane crash is named Stephanie Nielson. She actually started her blog before her life changing crash. Her blog was and still is about life as a mother, and that her dreams are fulfilled by mothering her children and having a wonderful husband. They are Mormon's. She basically paints a picture-perfect life before her crash.

The crash was while she and her husband were on a private plane, being flown by a friend. The friend got killed, and she and her husband suffered horrific burns. She was burned on 85% of her body. I think she was in a coma for 2 or so months, bandaged from head to toe, only breathing apparatus and feeding tube could be seen.

She has obviously been through the wringer. A much more vicious wringer than the one I have been through, in my mind. Most of her body is burned skin, her face is completely remade and patchy, and she is constantly dealing with her graft problems.She misses being pretty, but has made her peace with it. She doesn't talk about that much, though. She rejoices in being alive, and often talks about faith in the Heavenly Father (fill in the blank for which Father you want), and that all she wants is to fulfill His will and reassure her children that they are protected (I also say that, and that God knows what our family needs. There, on the religion front, I actually do relate to her, even though she is Mormon).

She also had four kids when her accident happened. A year ago, she had another baby. I feel like she had the fifth kid I wanted. She went for it, going off all medicines to accomplish a healthy pregnancy. When, during her pregnancy, she wrote a blog update that they found out it is a girl, I literally cried. I yearned for another pregnancy (and I admit another girl), and she was braver than me to do it. She had lots of pain with stretching burned skin, and got into baths a lot to soothe her skin. After the birth, she had a plastic surgery procedure to take the stretched skin and bring it up across her belly to make her torso look and feel better. I could have done that, too, and had the reconstruction done without skin expanders at first like it would have to be now if I want to do it.

Her baby reminds me of Shifra. Gorgeous fluffy face, red hair, huge thighs.
My heart hurts when I see pictures of her. I know it is totally off-base for me to compare her with myself, (and she is quite a bit younger), but when it comes to coping with regular life, and having the heroism to have another baby after the tragedy, I come up short, in my mind.

She doesn't talk much about being overtired. Occasionally she has a hard day and is exhausted, but it sounds like regular exhaustion that everyone gets at the end of a long day with five kids. Neither she or her husband can work anymore, but I am sure they are financially well off (not important to get into details here). She has tons of active days, and writes about all the cool stuff she does with the kids & family, is always optimistic and sweet as pie. It seems to me that her faith has carried her into optimism much further than mine has.

It just seems to me that she never has non-functional days. I totally know that you are saying "she does, she just chooses not to write about them". That may be so, and I know her blog is of a very different nature than mine, just by virtue of the fact that she started hers before her accident, as a happy Mormon Mommy, living for her family and God. (I am that, too, sometimes, just replace Jewish for Mormon, right?)

She never talks about being in bed all day (except actually now when she just had gall-bladder removal surgery), and she has this amazing view of the world.

She had the fifth baby.
Even though:
She is visibly, very badly scarred all over every part of her body.
Oh, did I tell you that her book is already out? Yes it is. And it was immediately on the New York Times best seller's list. Yes it was.
I haven't started my book yet, although I really, really want to. So, I should get off my butt and just do it? Is that the answer? That can't be right, it intuitively doesn't sound right, but really, what is going on with me? I just am too damn tired. But I want it so bad to write about this all. ALL. How did she find time (and energy) and I can't seem to?

I have been so upset by this, starting from last night in an intense way (although me making comparison's between her and myself always is depressing, and has been going on ever since I started following her blog). Why last night? Well, I wanted to show Robert pictures of her 1 year old baby, because I feel she looks a bit like Shifra did. Well Robert got interested in seeing what this woman looked like beforehand, so we wound up looking at a good piece of her blog and short video clips. I got *so upset*. How can she be able to rise above adversity to such a level? Why am I overtired all the time and spend all days in bed sometimes, even forgetting to make the challot for Shabbat? Oh, here's that tidbit- it happened this past Friday- I only realized a half hour before Shabbat that we had no challot... that I didn't make them. Friends bailed us out by donating challot they had (thanks friends!), but the point is I was feeling so intensely tired and sick that I forgot to do the one thing I try to hold on to for Shabbat- making the challot. There was *nothing* all Shabbat on the table that I made. Yes, I am grateful that Robert cooks (words aren't enough, my sweetie), but I want so much to adorn the Shabbat table with challot (and it is a woman's mitzvah to do so) that actually forgetting to do that is very serious in my eyes.

What is wrong with me? You may be appalled at that question, but honestly, look at the situation. I got really really sick almost 6 years ago (anniversary coming up soon). I was in a coma for less than a week. I had a few life-saving surgeries and was left with huge scarring and skin grafts. Then after that I got another disease near where the first one was. I've had multiple surgeries. I have chronic pain and take very strong medicines to combat it.

This woman has skin grafts from head to toe. (oh, and did I tell you that her fingers don't work as they are meant to work, rebuilt after the accident?) I know all those grafts mean *a lot* of nerve pain. I *know* about nerve pain. I have it in such a bad way that if I am switching meds or for some reason I am not covered with anti-nerve pain medicine, the pain can actually debilitate me and make me cry out. She went off her meds to be pregnant and have another baby. I could never see myself being able to do that, not for one day. That medicine is my lifeline. Could it be that with my [large but comparatively small to hers] skin grafts are more painful that hers are? Are my wounds deeper? Gapey is literally a hole, which, before the graft was done, you could see straight through to my innards. Even though, it is impossible to fathom that I have more pain than her. I know pain is relative. I have seen many, many women in all stages of labor, and it is impossible to rate one person's pain with another's at the same stage. But yet, even with that experiential knowledge, I am comparing my pain with hers.

I know you guys are getting really annoyed with me by this point. You want me to chill out, get off her blog, and stop comparing myself to others.Easier said than done. But actually I am looking for comforting words here. I always am with my blogging.

(oh, and I had a minor car accident today. I am fine except very shaken up, mostly because the other driver went OFF on me (even though it was his fault and he knew it) calling me all sorts of things one shouldn't say in front of their KIDS (yes, his kids were right there with him. Thankfully I was alone). He didn't cooperate and give me his name, so I took down his license and called my insurance. It'll be OK. I just feel crappy.)

Let's pray for a better week ahead.

(Oh, if you want to see her blog, I feel I have a responsibility to link to her: here it is.)


  1. My gut instinct is the blogger is not as honest about bad days, and those moments of doubt and despair, as you are. It doesn't mean she doesn't have them, it means she prefers not to discuss them. That's what makes your blog so important: it's honesty-and the search for meaning/spiritual uplift while still being grounded in the painful real world. Vis a vis her pregnancy-I'm wondering if it wasn't somewhat irresponsible bringing another baby into the world while she still is recovering from wha happened to her.

    1. extrapolate that please, Ken- what is irresponsible about it? She was physically able to do it, the birth was good, and the baby was nursed until last week (one year), loved tremendously, and they called her their "miracle baby". They also have money- mostly obtained since the accident *because* of the accident and the press, gifts and support from all over the world, she was on Oprah and other big shows, etc. Love is there, care is there, money is there, so I am really interested to hear your thinking here.

  2. Sarah, just had to comment since I'm Mormon and had read the blog you reference here. (And funny that the blogs you are reading are by Mormons, this one and the woman in Australia who lost her husband and son.) Anyway, you caught my attention, and now I feel I should respond so you know I'm thinking of you.

    Anyway, I don't think you should compare or worry, but I know that's easier said than done! I agree with you and Ken above - her blog was started focusing on motherhood and that's what she focuses on, while yours was more focused on your experiences with NF. I'm sure she has plenty of bad days - it's just not what she chooses to focus her blog on, while yours is a different vehicle. And different people experience things differently, and process things differently.

    I don't know whether that made any sense, but nobody reading here thinks you are anything less than amazing! I know there are days when you don't feel that way, but please remember that you are :-)

    1. Here is a great site about it:

  3. Did you really read her blog? She's not superwoman, and you shouldn't feel lacking because of her. Here's a quote, which could be you: "But being home and being sick are a horrible combination. I feel a lot of guilt. Guilt for the things I can't do. Guilt because I came home from the hospital and slept all the way until Sunday morning. I made myself get up and help the children get dressed for church, but the whole time I felt like sobbing. I hate being sick! I hate feeling like I am 100 years old! I noticed Mr. Nielson went to the store late the night before to get Easter treats for the kids. He picked up where I couldn't-and I am so grateful. But I am frustrated at the situation.
    I wanted to dye Easter eggs, get the children ready for church and wear my Easter bonnet. I wanted to get Easter dinner prepared, and set the table. I wanted to make it special for my family. Instead I lay in bed with a horrible stomach ache and achy body."

  4. Maybe I didn't read back far enough, I'll admit. But I still think you are amazing at dealing with the hand you were dealt. Please be kind to yourself.

  5. Since she still has many moments/days of tremendous pain, evidently, how much time/energy can she devote to her children? To knowingly bring another person into that world where parenting might be a difficult task, because of pain-I just think that was irresponsible of her. (Am I correct that she is still struggling with periods of tremendous pain/unwellness?)

  6. I agree with Jackie and Kenneth. That woman didn't know for sure everything would turn out the way it did. I can easily see complications that could have happened related to her health. What if something had happened with that? Things could have turned out differently. I didn't read her blog, no time, but I am wondering if that baby was planned. I remember how completely exhausted I was with a child after birth. I cannot imagine bringing one into my life when I am already tired and exhausted. Is it fair to anyone in the family including me?

  7. Be fair to yourself. If you were completely happy and healthy and read about a woman who was going through what you go through, what would you say to yourself?

  8. I really think that you are dealing with more grief. You are mourning the old you, the old life, the old dreams. Grief goes in stages. You have lost a lot and you will not get over it overnight.

  9. I also share with you information I have heard. Someone I know is always very positive on FB. She is a Christian woman with five children. She is very positive and upbeat. She shares wonderfully inspiring posts about things she does with her kids, ways she supports her family, etc. She doesn't include the negative. Because she wants to be something that women can strive to be. She doesn't want others to read negativity. She wants them to look to the ideal. She doesn't say she has the ideal. She rarely shares the negative. They happen in her life. Really. She has five kids! Is it a blessing to others to make it look like life is really easy? That if you just try hard enough you can be "perfect?" Do people realize that it isn't perfect? IDK.

  10. Sandra makes good points. Comparing yourself to someone else is really not possible; you don't know anything about her that she doesn't elect to include in her blog. You, on the other hand, are very open and forthcoming about what you are going through. Keep focusing on the good in your life.

    1. Ken, she doesn't talk about tremendous pain except directly after surgeries. Like this one last week- the one you quoted about, Jackie, where she slept straight though from Friday to Sunday and sobbed missing Easter with her kids. That was particularly because she was directly after difficult surgery. She had the second half of her gall bladder removed (first half was taken out because of the accident. (Side note- is that normal? Why didn't they take it all at one time? Anyway, I digress...), and at the same time used the general anesthesia opportunity to have the plastic surgeon fix some burned skin on her leg. That stuff HURTS. Aside from post-surgeries, she is the optimistic sweet-as-pie mommy of 5.
      I don't strive for perfection (well, maybe I do in certain areas of my life and my personality, but not when I am talking about optimism vs. pessimism).

      What's true, Sandra, and I really appreciate your point here, is that her grief, goes deep seeing as that she lost her pretty girl-next-door face. Her face is rebuilt as best as a surgeon could do at the time with what he had. People stare at her and whisper. She has mentioned that a few times. I know, though, that she didn't have a career. I do grieve *often* about not being able to work (stinging feeling in eyes now. Yup.) I didn't lose my regular looks. My disfigurement is under wraps. But I deeply (more and more each passing month) miss playing in an orchestra, as well as helping women have great, empowering births. It is so hard for me to explain to someone why I can't work any more. When I do start talking about the stuff I used to do, they are amazed, because here is someone who is young, with all these accolades and experience in uncommon careers, and not working at all. I mourn that a lot. It is the other gapey, so to speak. A hole in me where things I loved are gone now.
      And BTW- Jackie- I do read all her blog- never miss a post. I am really connected to her, whatever that means for me. Too bad it is only one way.

  11. sarah, everyone has their own way of writting. basiclly what all the others wrote above, she is in pain but maybe she doesn't put them down on paper. most of us mourn for things we don't or can't have. you have an amazing family and an amazing gift of the written word. when you get stronger. you will g-d willing write your book. rochel.

  12. Yes, comparing yourself to this woman isn't so productive. Sure, it's easy to do, especially when you're feeling down and depressed and discouraged. But your situation is unique to you, as hers is to her. First, the feelings you have about not having had the fifth child. For me, when I knew I couldn't have a fourth child, I rationalized it by saying that G-d had created three very special, beautiful souls and given them to us to raise. When I changed my thinking from what I wanted and couldn't have to what g-d had entrusted to me, my attitude changed. In the same way, I can't help thinking that G-d created four beautiful souls and gave them to you and Robert to raise and nurture. Did He know that you would be enduring the kinds of challenges you have today? That's not a question I'm wiling to even guess at. But I fully believe that he put those four souls into the home that would give them what they need--love, nurture, the lessons about dealing with adversity that they'll need as adults. Not the kinds of lessons you want them to have to learn, but lessons that have and will continue to make them strong. And he entrusted you with the job of loving and teaching those souls. Of course you wanted another baby, as you've said for a few years. As a doula you've seen so many beautiful babies come into the world. As a loving (and very excellent) mother, you have so much love in your heart that sharing it with another baby would be the most natural thing in the world. It's hard to accept the reality that it won't happen. It's interesting that you connect with the other blogger's faith in such matters. You both have the same ability to accept what G-d has ordained for you, but I can understand how you can wish that He had ordained the same thing for you as for her.

    On the rest of your comments, I have to disagree that she's been through so much more than you. You've been through different things. When you compare yourself negatively with her, you diminish the significance of what you and people who love you have experienced for the past several years. When you were in a coma for two months, Robert didn't suffer any less than Stephanie's husband did. Your pain is no less real, no less acute than hers--different pain, but equally hard. And you both carry scars, internal as well as external, that affect you with equal depth. I think the difference between your Jewish approach and her Mormon approach is that she's "hard wired" to accept everything that happens to her without question, while as a Jew you have no qualms about questioning G-d at the same time that you accept. We Jews have always ranted and raved at G-d; we know that He can take it, that His love is never-ending, just as the love of a human parent survives the moaning of the children. We complain because it's safe to complain. We doubt because we can afford to doubt; G-d will be there regardless. So, don't hesitate to behave as you do--you may bemoan what you're going through, and you have every right to--but underneath it all, you know in the deepest part of your spirit that regardless, G-d is with you. Stephanie may express that knowledge differently than you do, but her faith isn't any stronger than yours. And as your friend points out, you don't know what she feels in her down moments away from the blog, away from the book. If she has absolutely no down moments, I'd wonder if she had a lobotomy!

    Your approach has been different all along: you've chosen to be very open about what you're going through and how you feel about it. It takes a special form of courage to share as much of yourself as you do through your blogs. And I wouldn't make comparisons either about writing the book. It'll come. Your blogs are a running draft of the chapters. When you're physically and emotionally ready, you'll be able to put it all together.
    Love you,


  13. Sarah, I totally understand why you find this blogger so inspiring and yet so aggravating. There is no doubt that she keeps the physical pain and frustrations/difficulties of raising 5 children mostly to herself. While that can be inspiring, it also means that she's setting an unrealistic standard that few can or should measure up to.

    The fact that she doesn't share all the negative stuff doesn't mean it doesn't exist.

    I read your blog because you're honest and open about the struggles. You inspire me to be a better mom to the children I have (like you, I was told it was medically unsafe to have more kids. I personally think that risking oneself to have a baby isn't fair to the kids who are already born.) You're human in the best possible way.

    You'll write your book when you're able to write your book. Your life is still in mid-chapter and the book will come b'sha'a tova.- when it's meant to. Just know that YOU inspire many of us.

    1. Michele, thank you *so* much. Your words are really uplifting! Thanks for relating with me about the 'not being able to have another kid because of health reasons' front. That always helps me a lot.
      Thanks also for telling me I inspire you & others. I needed to hear that. :0)

  14. Dear Sarah,

    Well of course you are jealous of that Mormon chick! How could you not be? You didn’t want riches or power, you wanted another child – a sister for Shifra, something you didn’t have yourself. And how unfair is it that she got another kid, and you didn’t?! Of course, she went through a lot of hell, and you don’t discount that. But, she seems to be ahead of the game, and you are behind. And that stinks. So there you have it.

    For all the … oh, I don’t know, everything you could say you should/could do to pull yourself up and out, the emes is that there is physiology going on here – that if you take medication, which you need for basic survival, then you will suffer fatigue. That is the unfortunate equation. You are always, it seems, trading productive times for times you have to pay the piper and sleep to recover (and more). Well, of course that stinks. Of course you want more. And of course, this chick’s blog throws in your face that someone else, who also went through a LOT, now seems to not only have an easier recovery, but she got to sneak in another baby, and a girl no less! Well, I guess you’re not Mother Teresa, or whoever the Jewish equivalent is who just rises above jealousy and human emotion.

    Of course you should look at the good. Of course you should focus on the positive. Of course you should give terrific thanks to the One Above you gave you a wonderful husband and 4 great kids. But, you are who you are, and where you are, and the normal thing is to (with all the hakarat ha-tov, etc.) feel sorry for yourself and feel jealous of someone who seems to have overcome even worse adversity, and come through ahead of you.

    Not to sound too teenager-y, but “duh.” Of course you feel like that.

    However, with the recognition that this is so, you can recognize that your fatigue robs you of much, but you are gonna keep on plugging, and do the best with what you have. You just gotta do your best, even though it’s not at the level you crave.

    Sarah dear, baking challa is no small thing. Many, many women don’t bake at all. Maybe you would consider doing something less demanding/time consuming than challa baking. And don’t knock yourself. It’s amazing to me that you do what you do. And I loved those photos from Pesach.

    With you all the way!

    1. Jolie, you are real, you speak truths, and I love you for that! I love your attitude of honesty about recognizing jealousy as part of the human condition, and at the same time, offer up alternatives. thanks for being you, my dear!!

  15. Sarah,
    I have not read this blog, but I do know the kind of comparisons you mean. And as you know yourself, they are NOT healthy. Every time I see you, I see a confident, beautiful, attractive, strong woman. You should look at yourself more in the mirror. And find your inspiration in your own story. Much of what you are talking about is how you choose to perceive your situation (and by comparison, how plane crash woman sees/presents hers). If your blog focused on only the positive, the nature of your blog as an outpouring of your difficulties would change. Maybe you do want to do that, but you still need an outlet, and the blog might be a way of writing rather than living the difficulties. Which is not to say that you are not bombarded with a million difficult decisions on how to use the strength you have on a daily basis. But it means that perhaps if you let out your frustrations here, they will not be there in your interaction with your kids.
    With much love and kisses,

  16. Sarah, regarding the fifth unborn child. A friend of mine who never had children of her own is now the foster mother of a teenager in need of a home and a great deal of love. Perhaps, in the future, when you're feeling much better, you and Robert might want to adopt or foster an older child. You guys sure do have a lot of love to give.

  17. Dear Sarah,

    I just read this blog entry with all the comments.

    Some of the comments actually bothered me because they seemed judgmental re-the other woman. I doubt that's what you wanted.

    Although she writes about her pain and tiredness etc. after procedures,
    I agree with all who say that her main focus for her blog is the mother parenting family
    so she isn't going to express the daily challenges of her physical challenges.
    Perhaps, since she began the blog before the accident, it is the one area in which she can
    "continue life as if the accident hadn't happened," the one place that she can escape
    from the reality of her situation.

    You, Sarah dear, don't choose to do that with your blog since that's not your purpose for your blog.
    Your blog is to share you experiences and give awareness to others of what it's like to survive
    and have the challenges you do.

    The friend who stated that making comparisons is normal, is correct.
    It's just important not to get bogged down with them.

    Remember the famous quote with Zusha (correct name?) that when his days on earth are over
    he will not be asked why he wasn't like Moshe or whomever else, but why he wasn't like Zusha.

    I'm sure tons of people look at you and ask themselves, "How does she do it?"
    Some leave it at that. Some, I believe, take that question a step further being inspired to do more
    with the abilities they have.

    Re-the fifth child. Sweetie, those of us who so love having children can never have enough.
    She has her fifth child and will probably want a sixth but will not necessarily take the same chances.
    Someone who has eleven and has reached an age where she can't have more mourns with the transition.
    All we can do is keep the sadness limited and rejoice with the treasures of the children whom we have
    been so lucky to have.

    Rejoice in all that you succeed in doing, so much beyond what many with far less challenges achieve.
    Rejoice that you can do things your way, including having an open blog which inspires and educates with all it's openness.
    Rejoice that you succeed in shining
    and when after 120 years you come to the gates of Olam Haba'ah
    and they ask you, "Who are you and who are you like?"
    You will truthfully answer, "I'm Sarah and I tried my best to live to my full potential."
    Then you will get a real star (not the gold sticker kind) and continue to shine as you are doing here.

    When you were in the hospital you mentioned to me how all the things I put up on facebook are so positive.
    That's what I choose to send out to others on Facebook. I don't have a blog.
    I share my downs with friends through different means.
    No one who is human can be up all the time.
    There are, lo aleinu, people who are down all the time.

    I hope our lives become less challenging but I'm glad we have the strength
    and awareness to be able to handle problems.

    Lots of Love,

  18. I actually really enjoyed reading your post. I don't think your "crazy" for comparing yourself to others. it is all relative. we think we * know * what others go thru, but until someone is in the other's shoes, we can not profess to know what its like. I am inspired by you and the struggles that you overcome on a daily basis. keep it up!

  19. Hi Sarah,

    I think it's normal to make such comparisons, especially when you find someone you identify with so strongly. Maybe you could consider it "blogger rivalry"? ;)

    Just remember that you're only seeing the parts of her that she decided to present. Also, you both had completely different illnesses. Yours was totally systemic, getting into the insides of your bones, not just the skin (not that i want to belittle her experience). It's natural that you'd have different recovery paths.

    And who knows what the future will bring -- maybe one day soon she'll be reading your blog, saying damn this is good, i wish i'd been more honest.

    love you,

    btw i'm using all my self control not to post a Mormon joke ;)

    1. Claud- send me the Mormon joke on my email. :)
      love you!!

  20. Sarah, if she doesn't tell us, we don't know for sure what she is going through. Maybe she is not having terrible nerve pain. Maybe she is.

    If she is, and she's choosing not to share it, then we're getting a very incomplete picture of her life. We have no idea how she deals with the really awful days, what she is feeling then, how often she's incapaciated etc. Given that we have NO POSSIBILITY of accurately guessing that stuff, and it could be at any level and to any degree, then making comparisons is beyond pointless. You're comparing yourself to an utter unknown. Imagine if all you posted was things like the pictures of Dov's Bar Mitzvah? She might feel inadequate in comparison.

    If she's NOT having terrible nerve pain, then the comparisons are clearly even more pointless. It's apples to oranges in any case.

    I do completely hear you though. I have known so many people who have had cancer in the past 5 years. Six mums more or less my age (one of whom died this week), and my son's school principal. Every one of us has "done" it differently. Some have soldiered on, some have fallen totally apart, some have taken time off and done nothing but recover, one didn'ttell anyone she had cancer at all, just kept it secret till she died. :-( I'm constantly struggling with comparisons and worrying that I didn't do it "right". (And then I was horrifiedwhen someone told me that I made it look almost fun--imagine someone else feeling they had to live up to that!!

    No one can walk your journey for you and you can't walk anyone else's. I know you know that, but sometimes we need a reality check from those who care about us. I know I regularly do. :-)