Gotta love blogland …
As some of you know, I have a blog best-friend-in-the-whole-world. Well, he is if you don’t count all my other best friends, but that is besides the point.
So, my blog best-friend-in-the-whole-world wrote a post today and the gist of it is that his mom has been diagnosed with a thing that is, well, terminal. She sounds like a fighter and since some people do ok with this ailment, we hope she has a good shot at NOT being one of those that go downhill fast. This guy loves his mother (how bizarre, no?) and we all wish her the best with her fight, and him the support he needs and the strength to support his mom, no? So, what does some (other) commenter do? He writes a comment which, in essence says, “I am a medical [sic] person and I figured out my mom’s disease before the doctors, and her health fell like a rock. She will shortly be worse off than my severely disabled son!” I don’t get it. I know I am just a simple blogger, but is that supportive to hear? The blogger expresses his fears and feelings that his mother is terminally ill, and he is “consoled” with a story of someone who crashed and burned.
Isn’t part of this blogging thing, at least in our little corner of it here, to be supportive. Don’t we (“we” specifically being those in this “club,” dealing with our severely disabled children-students-clients on a daily basis) use our blogs as an outlet, a supportive place, an exchange of ideas? Luckily I have only a few examples as those above, I think most of us do get it.
“Wow” on the poll in the last post. About one in ten of you voted, and thanks to those that did. From the comments and the “others,” I guess there is another one or two in the “really” category that did not choose it. I don’t know if I buy that there are more “never” than “occasionally” but if true, that is great.
Claire has a post where she throws around the F-word for sport, but also claims to have received an email calling her a “Debbie Downer” (shouldn’t it be “Crestfallen Claire”?). I have no comment, but some annonymous person did …
You are SO NOT a Debbie Downer. I kind of think that we all need to be more Debbie Downerish. Dealing with serious disability doesn’t have much upside. Everything would be better if our family never suffered this catastrophic injury. I can barely remember what normal life was like, but I know it was about a million percent better.
On one hand, Japan and Libya put life into perspective (Erika’s and Elizabeth’s comments). But in the confines of my family, Pearlsky and David make my life as tough and complicated as any. That said, if Anyone is listening, ummm, how about a bit of a break, will ya? And cut one for Aphrodite while You’re at it. And all my blog best friends. And, while You’re at it, bless Ken, tell him I suggested it, just to piss him off. And a blessing for a troll for even a troll needs a break. Thanks.
Monday we see the chief of orthopedics at the other big city fancy shmancy children’s hospital for a second opinion on Pearlsky’s scoliosis. He is not a “spine guy” anymore, he was, but he is wonderful. He is the same guy that the day before David’s big hip and leg orthopedic surgery five or six years ago said to us “Are you sure you want to continue and do this? This is the riskiest case I have taken on and have handpicked the anesthesiologist and nurses.” Way to instill confidence, doc! He is brilliant, a very straight shooter, and I trust him tremendously. Since there is so much conflicting information and advice on scoliosis, and since I can’t get her in her brace by myself, I really want his opinion on it all. Not sure I will want to hear what he says.
Aria got to go home from the NICU! Wishing them the best …
I am playing with some survey software and thinking of trying one here. Send me any survey questions (multiple choice, fill in the blank, etc.) that you would be interested in seeing how others of us answer.
First of all, I’d like to restate that I never comment anonymously or under any other name than my own or my dba. There are some very, um, unusual anonymouses out there.
Sending requests for blessings on Ken and his Mom. Thanks, SD for enlightening me on how to, um, affect him that way.
You almost didn’t get this comment due to my rush over to add my voice to the joy over at Aria’s Dad’s place.
Thanks for pointing us to Blogzilly and his current situation — I went there before I finished reading your post and am happy that I wrote a comment (I think) that was largely upbeat despite the dolor of my days of late.
I love the maestro quality of this blog post — would you mind organizing my life right now, in between your visits to the ortho guy and taking care of your daughter and your two businesses?
I never throw the “f word” around for sport and a well supported crest never falls.
A boy’s best friend is his Blogger…thanks dude. Although, I am sure that the news will miss most of the people who generally glance at my stuff. Good Holy Moly I take my sweet time to get to the FREAKIN’ point, don’t I? I’m sure some folks just went ‘OH GOD…another Star Wars post’…and went right on with their day.
Sometimes I tend to do that, hide the meat really deep inside the vegetables. Hee hee…hide the meat. But while I consider that sort of nifty and crafty and creative, I’m sure it sabotages the message 8.756 out of 10 times. The title and oft the core pics have nothing to do with the main subject that I may not even get to until 3/4 of the way down.
I think I listened to WAY too much Garrison Keillor growing up.
Oh…and I forgot to put one of those smiley face thingys after my comment…’cause I’m joking, just in case….
ONE bad week and you’re gonna make me pay for it aren’t you? 🙂
I can’t believe some puke actually posted such a comment in response to a blog about a mother’s terminal illness. Oh wait, yes I can, as I know exactly who wrote it without having to refer to the post.
Best of luck to your mother, Ken.
Good luck with the spine appointment. I hope the doctor is able to help you and Pearlsky.
Thanks for watching my backside. Aside from a few unsightly hairs, it’s nice and round…muscular…um…did I say that out loud?
And thanks for the well wishes. Much appreciated.
Single dad, I often agree with you but I disagree with you vehemently here.
I don’t believe that “supportive” is even a meaningful term. I don’t see that the comment on the terminally ill mom was not “supportive.” It was merely realistic. It sounds as though you are saying you advocate an exchange of ideas, but only if those ideas are “supportive” (whatever that means).
I tend to dislike chirpy, hug-sending, good-vibey messages that consume bandwidth but don’t add to the discussion. I also dislike unrealistic views. Hoping and praying for a positive outcome is fine, but has nothing to do with the actual outcome.
So if blogzilly’s mother has a terminal diagnosis, that sucks. My father also has a terminal diagnosis, as of last month, and has gone downhill frighteningly quickly. Whether that is preferable to a longer, lingering death I will leave as an unanswered question. But stating either as fact or as opinion that bad health, disability or a terminal diagnosis is a bad thing is hardly “unsupportive” or being a troll.
You are usually very straightforward. I am surprised at how touch-feely you are sounding now.
PT: Thanks for the comment … I agree that Eric’s comment on Ken’s blog was realistic. And, no, I do believe an exchange of ideas, especially ones that do not agree, is a good thing. Heck, I appreciate your comment that itself disagrees with me. In this case what bothered me was not that the comment was only not supportive, it was that I saw the comment as both pointless and demoralizing.
My ex received a call at work from her doctor telling her that she had a mass in her breast and needed a biopsy. Upon hearing this, a co-worker that day decided to tell my ex that the co-worker’s sister had a mass that was biopsied and one thing led to another and her sister was dead in six months. To this day I do not understand the point of that conversation. I don’t understand telling someone a horror story when they are hurting. My ex was a mess for a week.
Ken was expressing great concern for his mom, and how both he and his mom are hoping she would have the slower form of the illness and not die or deteriorate quickly. Eric responded with a story of how his mom was diagnosed with something bad and she is crashing and will soon be more disabled than her severely disabled grandson. Personally, I do not understand the point of relaying that. To what end? What does it add?
That’s just me. If I get “touchy-feely” it may be when one manipulates someone else’s emotions (or mine). I think that is abhorrent. Giving applicable facts, either pro or con, and germane to the discussion, is great. Arguing a situation, I am all for that. But offering information that will only negatively affect someone’s emotional state, sorry, I disagree with that, and again, why was that particular story told? The medical issue is different, I don’t get it. If in fact Eric’s mother had exactly the same diagnosis, then at least the story would have been more appropriate, although demoralizing nonetheless.
Please, speak up when you disagree with me, but let me know when you think I get it right!
Ken, there is NO such thing as listening to too much Garrison Keillor, but yes, you do tend to ramble a bit. Not a criticism, I have upon occassion been accused of the same thing. You see, there was this one time that… (content expurgated due to time and relevence)
SD, ‘In the defence of a friend there is no need of apology’ Not really sure if that’s a quote, but it sounded too profound to have come from me.
PS: Ken, tell Momzilly that she can laugh at anyone’s dick she wants… but I’d apreciate it if she didn’t where I could hear her.
Since you asked, I also don’t agree that hearing “horror stories” about someone else’s condition necessarily makes a person feel bad. It could also serve to make someone feel lucky in comparison. I much prefer to read blogs by parents of disabled children than by parents of normal children. The latter just make me feel inadequate and make me annoyed that I am not able to do the happy, healthy family thing like they are. The former provide solace and not just solidarity. I may be in chronic pain, but at least I have no cognitive deficits and no problems when it comes to activities of daily living. And it may be tough to run a household and keep a job because I feel like crap all the time, but — yes, I’ll admit it — I am thankful that at least I don’t have to spend 24 hours tending a wheelchair-bound, non-verbal, sensory- and cognitively- impaired child.
Besides, some people do get a biopsy and die within months. That’s as valid a story as the one that gives false hope, about the biopsies that turn out to be nothing. I am sure this is not what you intend, but it sounds as though you approve of people relaying relevant stories only when their words make others feel better or at least don’t make others feel worse. They can’t be — using your words — demoralizing or manipulative. But the real question is: Who’s to be the judge of that? One person might think it’s a demoralizing and manipulative horror story, while another might think it’s a heartening “but for the grace of God, there go I” story.
PT…”I am thankful that at least I don’t have to spend 24 hours tending a wheelchair-bound, non-verbal, sensory- and cognitively- impaired child.” For the sake of all disabled children in North America, so the hell am I. I suggest you move along before you put your foot in your mouth again.
PT: Sometimes I say jokingly that people only read my blog to feel better about their own lives, as it provides them with a sense of relief that at least they are not me. However, hearing this same sentiment from someone else didn’t sound so funny. (You know, kind of like Cyrano and his nose.) I’m sure you didn’t intend to be hurtful and it just came out wrong, but this statement “I am thankful that at least I don’t have to spend 24 hours tending a wheelchair-bound, non-verbal, sensory- and cognitively- impaired child.” really made me feel like crap. It was a bit like telling someone, “I know I’m not very pretty, but man I’m thankful that I don’t have to live with a head like yours.”
PT: You say “it sounds as though you approve of people relaying relevant stories only when their words make others feel better or at least don’t make others feel worse.” I am not sure how you can say that when I clearly state “If in fact Eric’s mother had exactly the same diagnosis, then at least the story would have been more appropriate …” Yes, appropriate, as long as it was germane. Relaying RELEVANT and GERMANE stories makes sense. But, alas, this boils down to my believing that some people are insensitive. And, judging by the emails I have received today, and the comments on this post, having a discussion with you on sensitivity may be moot. I am glad that reading about my life with Pearlsky offers you solace.
“I am thankful that at least I don’t have to spend 24 hours tending a wheelchair-bound, non-verbal, sensory- and cognitively- impaired child.”
PT – Thank you for writing this. Thank you for recognizing that it is a most impossible situation. I do care for and love my child that is as described by your sentence and worse, and rather than be criticized by people for choices I make regarding his care, or have people feel pity for us, or praise me for my doing it… your words mean far more to me. It’s totally fucking impossible. Thank you for recognizing that.
I wonder if Pepto makes a product that would clear up the verbal diarrhea that has been spewed here.
As my fellow Angeleno once said, “Can’t we all just get along?”
Elizabeth… tu verdad es verdad
What’s swimming got to do with anything? 🙂
I can relate with this one. Sad but we need to be strong and move on with our lives.