How to talk to someone with ALS: The Do’s and Don’ts
1) If someone tells you that they have ALS, do not respond by saying, “You know I’ve been getting these headaches. Do you think I have ALS?” I’m not saying never do this. You may do this if the ALS patient to whom you’re addressing is, let’s say, A FUCKING NEUROSURGEON. You may also say, “You know I’ve been getting these headaches. Do you think I have ALS?” if you’re okay with the response, “No. I don’t think you have ALS. I’m pretty sure you have an inoperable brain tumor.” This will probably not offend you because if you said, “You know I’ve been getting these headaches. Do you think I have ALS?” you no doubt have a very small brain. Which means you are a DUMBASS. Other than these 2 examples, it’s really better not to ask someone with ALS to give you this complex diagnosis that takes some neurologists years to figure out.
2) Here are the circumstances under which you can say, “I know how you feel,” “Tell me about it,” or “Girl, I’ve been there” to someone with ALS. The circumstances are: If you are an asthmatic quadriplegic with a speech impediment who has created an incendiary piece of art that has inflamed the Muslim community and caused them to put a fatwah with a price of 5,000,000 dinar on your head. Let me check, yep. That’s pretty much the only circumstance that you can say those things.
Please note: If you are an extremist Muslim, say, a Wahhabist, and take offense at this, PLEASE put a fatwah out on me. That sounds like a much more interesting way to die than ALS.
3) Do not tell someone with ALS what death and the afterlife are like, unless you went through a dark tunnel following a white light at the end of which you were met by Elvis, who told you to go back because it wasn’t your time yet and you were needed on Earth to make rock’n’roll history. If this has not happened to you, I am kind of confused as to how you could make any claims about the afterlife and, in fact, I will go so far as to say that if you make these claims to me, I will make it my personal mission to haunt you and make shitty predictions about what will happen to you during the course of any given day. When I’m wrong, I’ll say things like, “Hey, how was I supposed to know? I’ve never sky-dived.”
4) Please do not volunteer advice to someone with ALS about forgiving former boyfriends, family members, etc. I’m pretty sure that if I hang on to a grudge with you-know-who-you-are (oh no, you don’t, because you don’t read this blog). Anyway, I’m pretty sure that if I hang on to a grudge with the aforementioned you-know-who-you-are, it will not prolong my life. If it did, I would get me some more grudges and stay bitter until stem cells are perfected. Truth is, people who die of gunshot wounds do not forgive the bullet, the gun, or the asshole that shot them. And they still die.
5) Don't call me differently-abled. I used to walk and feed myself and dress myself. I'm not different now. I'm worse-abled. It kind of sucks to lose abilities. It's not just different. I know I sound demanding and bitchy, but that's me putting the "dis" in "disabled."
6) Ixnay on the Esus-Jay.
Here are a few Do’s.
1) You can say or do almost anything if you’re saying or doing it from the heart. You can even say really banal and clichéd things that you only read on greeting cards with pictures of sunsets, and if you really mean it, and if you’re saying it as much for the revelatory nature the words have in the context of crippling illness and untimely death, then you can say things like, “Make every moment count” and it will be okay. Please note: While I agree that it is important to make a lot of moments count, I don’t think it’s fair to tell someone to make every moment count, because they will fail. A lot of people with ALS are type A over-achievers (except of course for slackers. Yes, I’m talking to you, Stephen Hawking. Come on! You live 40+ years with a disease that has a life expectancy of 2 to 5 years and all you can come up with is A BRIEF History of Time? Hell, if I had that long, I could come up with A Relentless and Tediously Long History of Time. Ooooh snap! Stephen Hawking, you’ve been served!), so if you tell them to make every moment count, they’re going to feel guilty when they sit glassy-eyed in front of the TV watching episode upon episode of MI 5. How about, “Make a shit load of moments count, but leave time for TV, tanning beds and masturbation.” Just a thought.
2) You can say tasteless things. See above.
3) If you say something stupid, try to make it so colossally stupid that the person with ALS gets the indescribable joy of repeating your faux pas to everyone that will listen and, perhaps, even write a blog about what an idiot you are. A fatal illness does not cure one of being judgmental, gossipy, or prone to Schadenfreude. One of my favorite reactions, no make it two of my favorite reactions, to me telling someone I had ALS was a guy who brushed me away with a wave of his hand and said a word that can’t be spelled, though might be spell-able in Yiddish. The word is “Ach!” The context was, 1) wave of hand and brush off gesture, 2) emitting of sound, “Ach!” 3) departing bellowing the words “Stem cells!” The other guy who did this was an actual medical doctor. For more bout him, see my blog titled, “The Worst Doctor Ever.” His response was, “Go stem cells!” in a kind of Inspector Gadget, “Go Go Gadget” way. I must have told a hundred people about these two guys. It brings me great joy to see the look of horror and disbelief on people’s faces when they realize that actual carbon-based life forms would say that to other carbon-based life forms. I also love love love the lady from Shanghai who also dismissed me with a wave of her hand and said, “Dohn worry. Darri Rama say you gohna have anuda rife.” It was oddly comforting in an absurd way.
So let’s review: Don’t be a little bit stupid. Be really REALLY stupid. Don’t worry about what you’re saying because if you’re worrying about what you’re saying, you’re probably getting it wrong. Do make tasteless and inappropriate jokes if the occasion requires. Don’t ask for a diagnosis from anyone other than a licensed professional. Don’t mistake yourself for a military chaplain on the front lines or a guy in a cave on the mountaintop dispensing deep spiritual shit. If I want that, I will find an ADA accessible cave complete with ascetic monk. Empathize with extreme caution. And do your own forgiving. I’ll do mine.
I know I missed out some crucial Do’s an Don’ts. If you have ALS and you have something to add to this missive, please blog comment.
PS: To the person who was offended by my comments about Lou Gehrig’s sex appeal. I’m sorry you were offended. However, I’m pretty sure that there is not a man out there who is bummed out when he hears that somebody in the world would totally do him. As a matter of fact, any man who hates it when he finds out a person thinks he’s hot, please write a blog comment and enlighten us. I don’t think it disgraces his honor to point out that he was a hottie. In fact, I heard - probably in one of his biographies - that he was hung like an Iron Horse. At least I think I got that right.
Monday, November 16, 2009
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oh-my-fuckin'-god-you-are-one amazing-funny-intensely intelligent-one-of-a-kind-woman-with-a-right-the-fuck-on-attitude. ~thanks~
Hey I did Lou. And boy was he hung. So fuck anyone who doesn't think so.
When I told people of my devastation over my mother's breast cancer diagnosis, 4 out of 5 said without a beat, "I need to get a mammogram." It's like with labor. If the honoree of a baby shower talks of her upcoming herbal water birth, someone has to interrupt her to discuss how she used Propofol for hers. Carla, I know how you feel. Tell me about it. Girl, I've been there.
Carla, you are a Master Wordsmith with a hilarious, frank twist! Looking forward to to my next dose of blog-envy! ;-)
You're killing me!
my best friends name is lou, and that is as close as i got to that hottie! as for brain cells, lordie, i definitely have way less than your personal highness self of this bloggery. as for the stem thang- bring it on doc!
(tho i have no idea what the stem thang is...i have not googled it yet). hope to see you friday. much love. thank you for always making me laugh!
"And do your own forgiving. I’ll do mine."
I wish the world would follow this advice - it would be a much better place!
as a card-carryin' Kaiser member who has ALS, I was recently informed that my new power chair is only a rental, returnable on my death. apparently, this brand new policy is the result the rather rapid turnover rate of us ALSers in their system. Thrive, my ass.
Jason ALS Boy Picetti
Carla, you are hysterical...I love your ability to slice through the crap and get right to the meat/heart of things...you inspire me to not take mediocrity as my stance in life. Take it on, she says....I will.
Lou did have a BIIIG bat.
Don't talk about the person with ALS to a caregiver while in the same room as if the person doesn't exist.
Don't yell. Just because someone can't move, doesn't mean they can't hear.
Don't mistake paralysis for coma, because if the person miraculously gains movement, your scrotum is in mortal danger.
Do remember your own humanity and just be there for the person.
Do touch (appropriately), since the sense of feeling is unaffected by ALS.
Do buy Carla's inspired Always Looking Sexy calendar.
Do attend the screening of Carla's film Leave Them Laughing on 11/20 at the College of Marin.
Do anything you can to help raise awareness and $ for ALS.
Love you C,
This is going to be the easiest 5,000,000 dinar I have ever earned. Please send your home address to me at FatwaFred@yahoo.com.
Gee Carla, I get these muscle twitches in my penis every time I think of Lou Gehrig... does that mean I have ALS???
You know who this one's from....
Awesome blog once again...
You have the gift. It blows that you won't be able to use it forever. But then again, if you weren't dying from ALS, you wouldn't be doing this, so there you go...a bit of irony. Inappropriate enough?
Love you already girl.
thank you for bringing your voice to this f'd up party.
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