Wednesday, August 14, 2013

A Reply to a Comment

Ocean Park

Here's the comment:

I was just reading your post from yesterday and from today. Got me wondering. Are we, most of us, destined to carry the weight of guilt and anger our entire lives? I feel often that I will. I read so many blogs and that is the recurrent theme. I speak to friends who have kids with severe disabilities and the theme pops up.
Got a question for you and I want you to give it some thought and maybe you can answer it, maybe you can't, because lately I have been wanting to drive my car into the local reservoir, and I'd like a reason not to. Not sure that the answer will be a reason, in fact it won't be. But it gives me something to look forward to.
Why can some people seemingly have circumstances similar to our own, and I'm talking some really heavy shit happening in their life, or to their kid or kids, and they don't experience that same reaction? They actually seem to go the other way with it...a way of somehow nuking the negativity of all the bullshit that surrounds them and always finding something positive about every single thing that they encounter?
What is their secret? I need to know. I've always been told how negative I am. I stopped blogging last December, partly because I was told by people close to me that all I ever do is talk about negative stuff. But to me, this life can be SO FREAKIN' NEGATIVE sometimes that I do not know how to be positive anymore. And I am only in year five. My fear is that I am going to forget, particularly if I cannot get my son's violently aggressive behaviors under control and things just keep getting worse and worse.
Sorry I hijacked your blog for this, but it has been eating at me, and I promised myself not to write in my own blog for at least a year. And you have the ability, like a few others, to sometimes be both positive AND negative. Or to at least write beautifully about feeling negatively, if that makes any sense. Your insight would be tasty...
Here's my reply:

First, a big hmmmmmmmmmmmmmm. My first impulse is to wish that I were Bob Dylan or at least had an encyclopedic knowledge of Dylan, because I'm sure there's an answer to your question in one of his songs. Next, I thank you for taking the time to comment, to pour your heart out and for your kind words. I've missed your visits here and, more importantly, I've missed your voice on your own blog. I think that I have, actually, a simple answer to your question and that is that I don't fear the "negative" emotions any more or less than I welcome the "positive" ones. As I get older, I find myself more and more drawn to what are, I guess, Buddhist principles, and my daily practice of mindfulness helps me to shift my thinking self into some semblance of equanimity. That sounds like a whole bunch of mumbo-jumbo when I read it, but it's the truth. I, too, have been accused of being negative -- relentlessly so -- and the accusations have come from close relatives. When I feel beaten or defensive, I might think "Fuck-em," but I more often stop, pause and reflect on the negativity that I might have let fly and then observe it. I don't judge it. You ask why some people are "always finding something positive about every single thing that they encounter?"  I actually don't think there's any secret to that at all, and, frankly, I don't believe them -- there's no ring of truth -- for me -- from those who deny or suppress valid emotions, and I believe the "negative" emotions are as valid and real as the "positive" ones. You ARE only in year five, as you said, but I can assure you that in year five (nearly twenty years ago!), I wouldn't have written the same reply to your comment. I might, even, have contemplated joining you in that car into the reservoir. I think it was actually during year five that I took an MBSR (mindfulness based stress reduction) class and began really sitting with my grief and anger and loss and just observing it rather than fighting it. I don't want this reply to sound like some sort of infomercial, though, and I remember your posts over the years that I read them as being far from relentlessly negative but more often brutally honest, filled with humor and love for your family. It sounds to me that "promising yourself not to write in my blog for at least a year" is self-punishing -- and I don't fully understand it. When I look back on the early years of parenting Sophie, I realize that if I had known where the future would lead, I wouldn't have been able to handle it. That being said, I AM handling it, and there is much that is beautiful in my life, so I have faith that at some future date, things will be all right, I will have learned to "handle" it, things will evolve, there will still be guilt and anger, loss, rage but there will also be acceptance and love and things gained and laughter. I will always work to hold all -- and that work for me is lightened through my connections to others, above all, but also through reading, through practice, through art and through writing.

Now, where's that Bob Dylan song? Here's my favorite:

Bob Dylan - Love minus zero-no limit (live 1965) by Bambino_Portoghese


  1. I am so deeply humbled by the question, and by the answer, and i learn so much from you, elizabeth. i do hope the commenter returns to blogging. I really do believe one cure for negative events or responses is to relentlessly confront it, look it in the face and not flinch, because then you have one more experience of knowing you can handle...whatever. some of us, you, have so much to handle. i think your way through, one moment observed at a time, all judgment released to the ether, is just pure zen brilliance, like a bright light that shows are the grit and roughness but all that can elevate us, too. Sorry to ramble. I'm just so grateful for this post, and you. Especially you.

  2. Dearest Elizabeth,
    I can only imagine that the your particular commenter found your response pure gold. I come here to read you on a daily basis because of your balance. I love the negativity as well as the positivity and the poetry and the humanness that you so gracefully show without fear of judgement. At least I hope there is no fear - and should there be any, please allow the Love that comes from so many of us to banish it.

    This is a duality in which we live, good and bad, dark and light, horror and brilliance and unless we embrace it all, we never become fully human. You offer, to us in this blog world, a glimpse of a woman doing exactly that, embracing it all. It gives courage and comfort. Thank god your brace commenter had you to turn to.

  3. For some of us our blogs are our outlet to vent. You can't sugar coat life and you can't keep it inside. I agree that not writing for a year is self punishing. If people think your posts are negative then they don't have to be reading them. I don't know everything your going through but I have been filled with frustration many times in my journey through raising my son through autism. We have had our share of tough times, critiscm from family and others here in town looking down on us. I learned to not care what they all though as they don't live with it. If you have to write it on your blog then I think your looking for support from others. I am sure many of us would there to support you. I think if you only write of the good times your trying to fool everyone.

  4. Dear St. Elizabeth,
    You gave ME the kick that I finally needed to put myself out into this blog world. Just me. All of me. The good, the bad, the ugly, the wonderful, the confused, the angry, the sad, the happy, the burnt out, the funny, the joyful, the bewildered....ME. Follow along if you dare ;)
    It's time. And I really DO believe you're at least part Saint. Sometimes, what appears to be the littlest of things, is the BIG thing that changes the trajectory entirely. Thank you, Saint Elizabeth!
    I've spent the last 44 years of my 46 years being the poster child for codependence (it seems) and having a sister with severe & profound mental retardation is one of those things that is, by far, the most beautiful dynamic my life has known AND my worst nightmare sometimes. Thank God, only sometimes.
    And it's been awhile since I've felt like driving my car into the nearest reservoir...although I think there's one nearby to here...
    Thank you for your candor, your gifts, your inspiration and for being the best neighbor ever (even though I was too afraid to knock!) Much love to you, the boys, and sweet Sophie. You're AMAZING...don't forget that! You should charge more than a nickel for your neuro services. xo Felicia

  5. You might be right...I may very well be punishing myself in some way. That in and of itself might be a part of the guilt and the anger.

    Funny that you said the thing about the negativity thing coming from close relatives. I often get that too. I find that comment comes from those closest to me. Which I find to be so freakin' ODD, because I don't see myself as negative. Not really. I see myself as realistic, and as having a sense of humor, not at all unlike the person you described.

    What trips me the EFF OUT is that people closest to me don't see that. Weird, right? Weird. So, yeah, thanks for such a complete response. Appreciate it.

    I agree for the most part about the negativity, but I'm not talking about sugar-coating as much as I am talking about tapping into some kind of ability to overcome shit that I see in people, an ability I can't seem to find in myself. I want to know how to harness that ability. These people who can do it have kids with disabilities start foundations, host webinars, run marathons, create companies or design special devices and stuff for the disabled even though they might feel as much of the anger and angst that I do.

    They just have be able to channel it differently...productively, somehow. I dunno. See, I'm in a town called Dunno right now, that's my problem. When I get to signs that point to OhYeah I guess I'll have a greater understanding, who knows? :) But this helps.

  6. I read this post earlier today and had to come back while I mulled it around in my head. When my daughter was born with Neurofibromatosis those closest to me were the most unsupportive. To this day I still can't figure out why. They just kept telling me she was fine, which she wasn't. Maybe it was their own denial at the magnitude of the situation. Maybe they were just being assholes. Maybe a bit of both. I really don't know.
    But being negative? Fuck! Who has any right to tell anyone that they need to stop being negative. If people don't like the words then don't read them. Go watch fucking "Pollyanna". Life is not easy and watching someone we love go through hell gives you the right to feel whatever. There is no right or wrong or positive or negative. They are just feelings. That is the biggest lesson I have learned while working in Palliative care. Whatever you feel is what you should be feeling and everyone deserves to be validated.
    Anyway..I hope your commenter decides to start posting again.

  7. I'm almost finished reading "The Mouse Proof Kitchen" by Saira Shah. I would highly recommend it to anyone with a disabled child. So often I read words that reflected how I felt over the years.

    Just a few short years ago when Katie was still at home and my marriage had fallen apart and I couldn't take it anymore, I considered driving into a semi with Katie in the van. It was so hard caring for her by ourselves.

    This is for your commenter, find a way to get someone to help you with your child's care. It's too much to do by yourself. It's also ok to feel negative and as Elizabeth said, it's ok to feel positive too. Feelings pass, they're neither good or bad, they're just feelings. And if writing helps you, then write. My family(sisters) found my blog a few days ago which started a shit storm. I took it down but will start a new one because I need to write. It's how I process things. Deb

  8. Wow. I find this exchange so interesting. And I want to ask you and your commenter how you saw yourselves "before" this huge challenge came into your lives. Did you view yourself as Pollyanna-ish and have that dragged out of you by your circumstances? Or did you view yourself as a somewhat negative person, or did other people view you that way and you just saw yourself as "realistic."

    I don't think I could be that positive person facing what you face. But no one knows until they are in it do they? And the one person I know well who is in these circumstances always was a very positive person and still is. I don't think she's hiding her emotions. I just think her natural self is what it is. Though I know that friends of hers who have a more generally negative view of things can't even comprehend where the positivity is coming from. I can't either exactly but I know it is genuine. I think though that the more negative people view it as "she must be trying so hard to seem like she feels that way." And some even think "Why can't I feel like that" Whereas I think that a lot has to do with our general natures and its not about right or wrong or one person working harder to be "positive" they simple are that way and have nothing to obtain that attitude really other than being born a certain way, which is hardly a virtue.

  9. Sitting with oneself, and not judging.
    Just sitting, breathing, giving it all space.
    (Like what you do at the end of the previous post.)

    I've been listening to *Saint* Pema Chodron a lot lately.In one talk, she speaks of abandoning hope — so radical an idea in our Judeo-Christian culture!

    But when one is able to do this, then what is becomes quite acceptable.

    I come here every day to find pathways into sitting with what is,
    and I'm never disappointed.

    Thank you for being here,
    and thank you to everyone who comments
    and keeps the conversation flowing.
    (I accidentally typed "glowing" instead of "flowing", then corrected. I kind of like "glowing"!)


  10. Elizabeth, I agree with your comment about the blogging. Why stop? It DOES seem like self-punishment, and if your commenter could open up that channel for self-expression once again it seems like it might help. My blog posts, as shallow as they are, often help me reflect and think things through. If I were faced with the serious familial challenges that you and your commenter face, I can only imagine how valuable it would be to have that outlet.

    I also thought your acknowledgement that things change over time -- that your response now is not the response you would have given in year five -- was insightful.

  11. Blogzilla- what you said in your comment in the comments ( ??? do you understand that lol ) rang so deeply to me. I have been asked that question before, for very different circumstances than your own, that I would never begin to 'compare' my own to. But I can offer my own experience. I had an abusive, traumatic childhood, filled with fun things like severe poverty, abuse of all kinds, possibly the worst being emotionally abusive, and I was left largely to my own devices to figure out how to survive any of it. I got pregnant at 19 when I was a fucking wreck still, had just been released from an institution at the end of my 17th year, and was basically jobless, hopeless and profoundly depressed verging on Totally Losing My Shit and Doing Something Crazy. After having my son, I had some kind of nervous breakdown that included more fun stuff like hallucinations and paranoia. I did not even have my high school degree, and the father left to places unknown before I even had the baby. During my breakdown, which like I said included hallucinations, which included, horrifyingly, hallucinations of throwing my baby over the balcony of my house, I had what I know feel like was some kind of tremendous spiritual revelation. Let me say quickly that I am not religious nor do I believe in 'God'. I don't's more like I have fond hopes ;) Anyway, during this time, as I was sitting in this great duality of darkness and light ( my love for my son ) I could feel, despite the insanity, this small 'me' inside of all the insanity. In other words, I had the realization that regardless of how insane my life was, there was still a me, buried however deeply, that could choose to come back. I could choose.

  12. Perhaps the reason this was so powerful for me was that I lived with chronic panic attacks and PTSD from my father, and I never, ever felt like I had a choice in how I reacted or acted as a child- no one told me I did. And at that moment, I realized that if I wanted to, I could choose to embrace life. I think that realization was so profound that it changed me permanently. I had seen 'those people' as you say all my life, and I wanted to be one of them SO BADLY. I truly believe that is half the battle right there. I had so much hope that I could one day be like that because I saw and read the stories of those who did learn. I went on to get my high school diploma, go to college, have another baby out of wedlock, marry a man who ended up having Bipolar 2 and is very ill with it, etc. My life has not been easy since my realization, full of moments of near breakdown. I have not been able to avoid the darkness. What I have been able to do is realize when I am in darkness, and get help. Getting help- that has been the singular most important thing I've done. I take help like starving people take food- greedily, with full absorption. I take classes on my problems, read books, read articles, go to therapy, take pills, changed my entire diet and nutrition, took up exercising, took up Buddhism like Elizabeth- most importantly, the being in each moment as it happens- etc. Some things are not bearable alone. That is true, and I believe that people who don't get that are legion, and they judge harshly. A person in incredible situations needs incredible support, whatever that looks like for them. Myself, I need a great therapist, medication, my books, my girlfriends. Over the years I have said ' i cannot do this without help ' and I have been relentless in finding that help. There is so much more I could say, like the time I decided, years ago, that damnit I was going to be that person who chirped fucking annoyingly ' what a beautiful sunset ', and every single day I forced myself to admire and be in the moment with the small joys of life, unknowingly to me, I was teaching myself mindfulness. It was so many little choices that led to where I am now, and I am not haughty- life could shoot me down to a darker place than I've ever known, and it probably will. It is the stories of other women who have come before me and how they did what they did that sustain me, and the love and principles of Buddhism, and yes, that little blue pill. I hope any of this means anything to you.

  13. I'm sorry if that was bad etiquette not acknowledging your post, Elizabeth, which was amazingly generous and compassionate and helpful. I just get emotional when I read someone so despairing, I just went straight to what I was feeling or thinking. Anyway I am copying and pasting the question and your reply to add to my super corny and embarrassing ( but helpful on a bad day ) 'inspiration' file in my email. xo

  14. i'm right there with Christy Shake. you really are something else...there's lot of hard-won wisdom floating around, but your articulate perspective is head and shoulders above the crowd. you're smart and funny and authentic, probably the values i admire most. i also think anger is a useful substitute for despair--at the very least there is that underlying energy that propels people forward. keep on truckin, my friend.

  15. I'm so grateful you posted that comment Elizabeth and it was so affirming to read your response.

    I think so often we are so hard on ourselves and constantly questioning why we have so-called negative emotions, why we can't "get it together" and focus on the positive etc etc etc.

    I think we need to give ourselves a break and recognize that the feelings we have are completely natural given the circumstances we're in and we don't need to beat ourselves over the head every time we feel them. I was reading The Examined Life recently (by a psychiatrist about his patients) and he talks about how people are under the illusion that they can "heal from grief" --that there's an endpoint to grief, not that it's cyclical and reappears at different times. And he wrote about how we make the situation worse by then castigating ourselves for not being "over" this grief. I think that applies to our situations and all the hard emotions around them.

    And I had to chuckle about the people who are doing all these superhuman things in addition to parenting their kid. 17 years ago I started an international association for my son's rare genetic condition -- I did it because it gave me a feeling of success at a time when I felt a complete failure in terms of helping my son's development forward. Just because people are throwing themselves into what appear to be positive activities doesn't mean they aren't having all the same feelings that we all have.

    And I'm also a big believer in therapy. I found a new therapist recently and part of me was saying: "You've already done so much therapy? Why can't you get it together?" And the other part of me said: "This situation is extraordinary and requires extraordinary supports." I hope your reader will keep writing.

    1. A very interesting response. That part about grief healing not having an endpoint is fascinating to me as it has come up in many a conversation over the past several months and I did do one bit of writing as a guest about that very subject. Ironic indeed. Anyway, I really enjoyed yours as well as many other responses, they give me a lot to think about. I was the "commenter". :)

  16. it's obviously time to publish "how we do it"... I have heard this "echo" from mother's I know who have disabled children... "I can't go to those support groups... everyone is so negative there it just brings me down." The challenges faced by parent's of disabled children are not my own, but the issue of how to handle very difficult feelings and gain support for those feelings from people both in and outside of the disabled community is profoundly universal.... and on a more shallow level a similar dilemna for all who call themselves parents. I love your response and I am hoping your commentator was helped by it.

  17. I often wonder whether other people who comment on someone's 'negativity' are themselves responding with fear to the message that person put out there. We are, after all, mirrors for each other. That said, if the commenter that prompted this post feels themselves that they are too negative, your response was perfect. I tend to be more observational and less judgmental of my own self as I age, too, and it has the effect of removing much of the fear and anxiety from my daily life that I was a slave to for many, many years.

    You rock.

  18. Had to copy and paste that one into my truth journal.



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