One of the toughest things about WTF Disease is the isolation of it — the doing it all by myself. If I said to someone, back in the day, “I have a kidney stone,” I would invariably get, “Oh, you poor thing, I had one of those back in ’82 . . . ” or at the very least, “I know someone who had that and . . . ”
But now, if I say, “I have an undiagnosed illness that causes me to feel like I’m choking all the time, sometimes aspirate liquids, and causes bizarre muscle contortions and buzzing sensations in my throat, tongue, lips, and sometimes it’s very hard to speak clearly, and I’m hoarse most of the time, and sometimes my legs are very weak and I can’t walk, and sometimes my arms are very weak and I can’t lift them, and sometimes my thumbs, they aren’t opposable, I mean, they have no strength, so I can’t use them (I guess that means they’re oppositional rather than opposable?), and my muscles, from my face to my feet, they jump and twitch, many times a day, and my bones, they hurt. Especially the longer ones. You ever have anything like that?”
SILENCE. Yea, no, not so much.
Many times during WTF, people have said to me, “Oh, I know someone who had exactly what you have . . . ” The end of that story varies — they died, they just got better, they got diagnosed and treated, they spontaneously combusted — but ultimately, upon investigation, turns out they didn’t have exactly what I have at all.
Last week my Mom called me. She told me about someone (the daughter of the friend of a cousin) who had exactly what I have, and they never did find out what it was, and she got so she couldn’t walk at all, and her husband had to carry her around for five years
::tangent::Jif, better get your ass to the gym::end tangent::
and she couldn’t talk, and one day she just got better. No diagnosis, no treatment, just got better. Now she’s fine. Don’t you want to call her?!
Sure. “Howdy, stranger! I understand you were seriously fucked up for five years, and now you’re not! ‘Sup wit dat?!”
No, Mom. I don’t want to call her. If she had a diagnosis; if she knew a doc to see or a pill to take . . . or anything that I could DO, I’d be all over her like smug on a doc’s face. But she just kinda . . . survived until she got better. I can do that. Thank you for telling me, I mean, others have told me this, too, that sometimes weird things happen and we never know what they were, and they go away. That would be wonderful. I still believe that could happen. But I don’t want to call her.
There are some people I could talk to, who have had these symptoms. Well, that is, I could talk to the ones who can still talk. But I don’t want to. Because even though I (nor 20+ docs) have not been able to figure out what other illness could produce all these conditions, I still choose to believe I don’t have that one. (There’s no test for it; it’s a “wait and see” diagnosis, they tell me.) Most (like, 99%) of people who have that illness become much more seriously incapacitated than I, over the period of time that I’ve had WTF Disease. For most, it progresses very quickly. So I keep hoping for some other definitive diagnosis, or to be one of those people who “just got better.” Living with the cloud of that other possibility, though . . . it weighs heavily.
Going to the center for that illness at JHU is on the short list of next steps that my primary doc and I recently discussed. For now, I’m not making the appointment. That could change at any time. And if I do have it, I’m very thankful for this relatively healthy time (compared to most other folks who have that), and I’ll keep trying to get better and better at using this time. That’s a thing I want to do regardless of what WTF is. Time is precious. Speech is precious. I try (and fail, but keep trying), to only say that which will be helpful, productive, creative for someone. And not to bother with all the rest — the petty, the critical, etc.
My Christian beliefs get me through every day with WTF. Because in my personal theology, there is another who knows exactly what it feels like to be in this body. There is nothing we experience that Jesus did not experience (Isaiah 53:3-5; Matthew 8:17). And the One who made all the cells understands how they’re going wrong and how to make them do right. So I do have someone to talk to. And I also think that in some ways, living with WTF is not unlike living with any other frightening illness. No matter how many people are in your support group, at the end of the day, you live in your body alone. Unless you believe, as I do, that the Spirit of God is in there with you. That helps, when nothing else does.
Work helps. Laughter helps. Touch helps. Blogging helps. Listeners help. Hope helps. There, now I did it. I wrote “help” so many times that it doesn’t even look like a word any more.
But what I really want to know from you, is, what is your favorite line from a movie?
My heart aches for you. I can only imagine how weary you are. I only hope and pray that you can feel all the good thoughts and the prayers being lifted on your behalf by all of us that you have touched through this blog. We want so much for you to be well.
Favorite line-Pride and Prejudice (of course)- Mr. Darcy ( as portrayed by Matthew McFadden): “You have bewitched me-body and soul. And…and… I love you.” I could watch it over and over again. Closely followed by Gary Oldman’s portrayal of Beethoven and when he reads the letter to his Immortal Beloved I near about come unglued.
I am such a geek.
Bloggy’s all-time favorite line from a movie…the opening line to Men in Black
“Goddamn bugs.”
“Like smug on a Doc’s face.”
Oh, that made me laugh. HARD.
My Mom, I know you know where I’m going with this, has an undiagnosed illness. Not really any of your symptoms, maybe a few. And she is going through the same hell as you are going through. I pray for you, I pray for my Mom. And I know this is no consolation but, “This to shall pass……HURRY THE FUCK UP.”
🙂
Does it have to be a movie I’ve actually seen? Because depending on how you define “favorite”, the movie line I use most frequently in daily conversation is from Stripes, which I’ve never seen: “Lighten up, Francis.”
If it has to be one I’ve seen, then I’d have to say: “That is not my dog” (in a bad French accent, of course), from the original Pink Panther movies. I use that all the time in response to questions to which I haven’t the answer.
Until this moment, I bet you never realized what a dork you had for a sister!! 😉
Susie, I’ll say little prayers that your WTF goes away very quickly. Favorite movie line is from Sweet Home Alabama “no I’m not shittin’ you”.
Not my favorite line from a movie…because there are too many..but a few you will appreciate..
“I’ll be taking these huggies and whatever cash ya got. ..and make it quick. Im in dutch with the wife. ”
“mighty fine cereal flakes Mrs. Mcdonough.”
“hell I don’t know…Yodas and shit…”
“Whenever I get gloomy with the state of the world, I think about the arrivals gate at Heathrow Airport. General opinion’s starting to make out that we live in a world of hatred and greed, but I don’t see that. It seems to me that love is everywhere. Often it’s not particularly dignified or newsworthy, but it’s always there – fathers and sons, mothers and daughters, husbands and wives, boyfriends, girlfriends, old friends. When the planes hit the Twin Towers, as far as I know none of the phone calls from the people on board were messages of hate or revenge – they were all messages of love. If you look for it, I’ve got a sneaking suspision love actually is all around. ” ~ Opening from Love Actually
I really wish you health and happier times!
I have read your blog on and off for a couple years and I have not chimed in too often. You are not alone Susie.I can relate to what you are feeling actually somewhat. My family has a disease called HSP and it is a progressive neuro condition. It gradually affects us all as life goes on with a variety of conditions similar to MS. Leaving a wonderful legacy for my children I have passed this damned condition on to at least 2 of my sons (they contracted at conception- it just manifests differently)
There are days when I would give lots just to have a normal walk across the yard or to be able to dance with my wife or run and play with my kids.
I am fortunate they were able to figure out what I have. There just is no cure and no treatment that gets rid of the symptoms long term if at all. Its a gradual progression of nerve damage until you are paralyzed to some degree for everyone that contracts it.
Ive known something was wrong since 1978. The more I have fought and not let it effect what my life challenges were the better my life is. It also has left a positive for my kids one of whom is going to face great adversity through his life because he is already struggling at 6 years old. I fight and try to achieve no matter what I feel like. Some days its not much- but I still fight.
I will certainly pray for you and can see how you are blessed in your writing and zest for life. I share your frustration and I will share in your hope that we gain insight to what is in store for our lives. I know the title is loneliness but your not really. Christ is with you and the rest of us freaks out on the net! We hope the best for you! Have a nice day. Jeff
I left out my favorite line its from Napoleon Dynomite “Grandma called- She said she wants you to go home cause your ruining everyones lives and eating all our steak”
“Let’s not ask for the moon, we have the stars.”
Bette Davis as Charlotte Vale in Now Voyager.
De-lurking to wish you the best ms. suzie.
weetzie
um, can’t think of my fave line, but my fave movies of all time:
Romancing the Stone
Adventures in Babysitting
Singin’ in the Rain
and
While You Were Sleeping
just watch any of those and you’ll smile…
Katty just wanted to say hi (and well, so did I!) We’re still thinking of you up here in Canada! Hugs and love!
You are still my hero, Susie. Had to tell you that. Just in case you forgot.
Favorite lines from a movie: “We got a cause of death on your jumper this morning….” “Ooooo – let me guess: deceleration trauma!” “Cement poisoning!” “No, he drowned.” “Poor guy couldn’t swim or fly – ” “Captain, you don’t need a cop – you need a lifeguard.”
“Running Scared” (starring Billy Crystal and Gregory Hines) – still, hands down, my favorite movie of all time.
Second place – The Replacements: “Pain heals, chicks dig scars, glory lasts forever.”
Hang in there, Susie!!
Oh well, that would have to be countless lines from Monty Python and the Holy Grail (well, I suppose you could count them if you wanted to), but anyway:
“I’m not dead yet” followed by “I feel HAPPEEEE”.
“We’re on a mission from God.” – Blues Brothers
“Gabba gabba gabba gabba, too much darling! It’s too much!” – Incredibles
“I’m Batman.” – Batman
“What are you going to do?”
“Get out of bed every morning and breathe in and out all day. And after a while I won’t have to remind myself to do it.”
“It was a million little things.”
“It was like coming home, only to no home I’d ever known.”
“It was … Like magic.” – Sleepless in Seattle
Most of my favorite movie lines are from “Real Genius” with Val Kilmer. So many to choose from!
Stuffy old man: “Why is that toy [headband with antennae] on your head?”
Val: “Because if I wear it anywhere else, it chafes.”
and
“What about that time I found you naked with that bowl of jello?”
“I was hot! And I was hungry!”
Oh, and from the currently running externally flameless Mommyvan Movie of the Week – “Cars”
“Black wall tires! They blend into the pavement. But these, WHITE WALL TIRES! They say, “Look at me! Here I am! LOVE me!”
deneen, both of those are very moving, and I’m embarrassed to say, I haven’t seen either. They sound like very good love stories.
mrB, a man of few words.
jennifer, yes, I suppose everything passes eventually, one way or another. I’ll pray for your Mom, too.
shari, oh, no, dear, I had you pegged for a dork from way back 😉 Stripes with Bill Murray? I liked that one. “The Aunt Jemima treatment” stuck with me. And I love the dog one 🙂
aprilz, thanks for your prayers, big, little, I’ll take ’em all. And that line is from a movie? It’s also from any gathering of my family.
william, ah, yes, thanks for those. I’m due for a viewing of that one, I think. And I’ve told you before, but I’ll tell you again, “Son, you’ve got a panty on your head.”
cindy, that’s beautiful. Thanks for that 🙂
jeff, I am so sorry that you’re having to deal with that. And the idea of passing it on to your kids — that must be torturous to think about it. I’m sure that you’ve also passed on your courage, and your spirit, and your determination to play the hand you’ve been dealt as well as you possibly can. Thanks for your example.
When you put it that way — I’ve got Christ and the ‘net freaks with me — really, what more could I ask?! 😉
And thanks for the quote, I truly LOLed. And I was reminded of my favorite ND quote: “Do you think anybody wants a roundhouse kick to the face while I’m wearin’ these bad boys?”
weetzie, thanks for a thoughtful quote, and it’s so nice to see you here 🙂
lawyerchik, oh, dear. Hero, eh? I’d better do better, then. I don’t feel very heroic lately. You have a wonderful (wicked) sense of humor. Love your quotes.
karen, I don’t remember that from the movie, but that sounds like a good motto 🙂
ck, you sound like a hopeless romantic. Or at least . . . romantic. You thought I was gonna say hopeless, dincha?
ern, I didn’t see that movie, but those are funnay 🙂
ck, I’m gonna start wearing white wall tires.
There are so many “Favorite Lines” cruising through my head, but today seemed to be loaded with chores, so I’ll go with
Audrey Hepburn aka as Princess Ann in Roman Holiday
“Duty. Please do not use that word. Were I not entirely aware of my duty to my family and to my country, I would not have come back tonight… or indeed ever again! ”
Sending positive vibes across the prairie, the river, over the Appalachians, and down the East Coast….
~~love and Huggs, Diane
I have way too many to list one favorite, but the one that I thought of immediately was
“Ya done broke mah dick hand”
Oh, Susie, get thee to a video store and rent Real Genius! Now!
You’re still here?
Well, let me give you a couple more quotes.
Self-realization. I was thinking of the immortal words of Socrates, who said, “I drank what?” (from Real Genius)
[to future employers] I’m sorry. It’s just that I didn’t want you guys to think I was stuffy. You know, no fun. All brain, no penis. (again with the Real Genius)
Samir: No one in this country can ever pronounce my name right. It’s not that hard: Samir Na-gheen-an-a-jar. Nagheenanajar.
Michael Bolton: Yeah, well at least your name isn’t Michael Bolton.
Samir: You know there’s nothing wrong with that name.
Michael Bolton: There was nothing wrong with it… until I was about 12 years old and that no-talent ass clown became famous and started winning Grammys.
Samir: Hmm… well why don’t you just go by Mike instead of Michael?
Michael Bolton: No way. Why should I change? He’s the one who sucks. (from Office Space – not to be watched when LG is nearby as the f-bomb is dropped liberally)
I hope you have a spontaneous remission also. We’ll keep praying for it.
Movie quotes? Where the hell do I start? I love movies.
Barton Fink “Sex? He’s a man! We wrestled!”
Snakes on a Plane “I have had it with these motherfucking snakes on this motherfucking plane!”
Monty Python and the Holy Grail “Strange women lying about in ponds, distributing swords, is no basis for a system of government”
Well, it’s late, I’ve just had a very strong gin and tonic, so I’ll come back when I think of more good quotes.
Have a good night, sis!
Oh Susie. Well, there are tons of favorite movie quotes in my mental database…
“Hey…Dad? Wanna have a catch?” Field of Dreams
“Get away from her, you bitch!” Aliens (come to think of it, I’d like to go all Sigourney Weaver on WTF’s ass. Maybe that could be an effective visualization technique for you!)
“There’s more to life than a little money, ya know. Don’tcha know that? And here ya are. And it’s a beautiful day. Well. I just don’t understand it.” Fargo
“Hey, sewer rat may taste like pumpkin pie, but I’d never know ’cause I wouldn’t eat the filthy mfer.” Pulp Fiction
That’s 30 minutes away. I’ll be there in 10.
Pulp Fiction, spoken by Harvey Kietel
Don’t ask for the moon! We have the stars! Now,
Voyager, spoken by Bette Davis
Fasten your seat-belts, it’s going to be a bumpy night.
All About Eve, spoken by Bette Davis
My Brain? It’s my second favorite organ.
Sleeper, Woody Allen
“Can I borrow your underpants for ten minutes?” from “Sixteen Candles”
“You want the truth?! You can’t handle the truth!”
I especially like this one from “A few good men”.
“At the end of the day you live in your body alone” the only way to describe the loneliness, but yet you never forget that God is there with you.
Favorite movie quotes Diane Keaton: “You’re so white”. Woody Allen: “I know, all the blood rushed to my brother”
Manhattan Murder Mystery
Favorite quote yet to happen is when we watch you on Oprah talking about your spontaneous remission from WTF, and you use all the words for WTF, and the censors let you get by with it!
You still have my prayers and hopes for spontaneous remission.
(was honestly going to quote my most favorite line ever, from the movie “stepmom,” but i won’t…)
Don’t say mole. MOLE. Moley moley moley!!
It’s better when Mike Myers says it, rather than all written out like that.
I know what you mean about the lonely, especially when symptoms are strange and even difficult to explain, and you’re the only one experiencing them. You want your doctors to experience it like you do, so you’re sure they truly get it. And you also want someone else to experience it, just for a moment, so they truly understand. It’s possible to be surrounded by love and yet still feel alone, and that is a scary realization.
“Death therapy, Bob. It’s a guaranteed cure.”
hehehehe…
I’m sorry you are feeling so lonely right now my friend. I think of you every day.
Hi Susie! Lots and lots of hugs and prayers coming your way. 🙂 I hope your devoted readers can ease at least a little of your lonliness.
My favorite quote is from Blazing Saddles:
Bart: Are we awake?
Jim: We’re not sure. Are we…black?
Bart: Yes, we are.
Jim: Then we’re awake, but very puzzled.
Hey, I never said I was PC.
Favorite line ever? Ving Rhames as Don King. In a restroom, one of his peeps asks him as he exits, “Mr. King, aren’t you going to wash your hands?”
“I wash my hands BEFORE I touch my d***!”
smooches
Hi Susiesue,
One of my favourite movie lines is actually from a series called ‘Faulty Towers’ with the wonderful John Cleese
‘Along with just about every other aspect of the room, Mrs Richards doesn’t rate the view very highly. Cue Basil:
“What did you expect to see out of a Torquay hotel bedroom window? Sydney Opera House perhaps? The Hanging Gardens of Babylon? Herds of wildebeest sweeping majestically…!” — ‘
Also most of the lines from an Irish series called ‘Fr Ted’
Smoochies,
KatieC
Oh I’ve got a couple of movie quotes floating around in my gray matter…(they may not be completely word accurate but who cares!)
“I can’t believe my grandma just felt me up” Sixteen Candles
“No more yanky my wankey the Donger need food!” Sixteen Candles
“I”m Batman”
“That man is not my husband” said by Jodie Foster in Somersby my all time favorite romantic movie
“Hallelulah, holy sh&t where’s the Tylenol!” Christmas Vacation (and any other line from that movie)
“Run Forest Run!” “Stop Forest Stop!” Forest Gump
I’m saying prayers that WTF will disappear very soon Susie.
Squirl and Nina took two of mine.
My all time favorite – Cher to Nicolas Cage in “Moonstruck”, right after she slaps him, “Snap out of it!!!”
My favorite lines come from the end of the movie and book, “The Sun Also Rises”:
Lady Brett Ashley: “We could have had such wonderful times together.”
Jake Barnes: “Isn’t it pretty to think so.”
Blessings and much shalom, Susie.
“Married? Married!” – Sixteen Candles
“Lake… big lake…” – Sixteen Candles
“Sometimes you just have to say, “What the f—“” — Risky Business 😉
“There’s a shortage of perfect breasts in the world, I’d hate for you to ruin yours…” – Princess Bride
“Have fun storming the castle!” – Princess Bride
(This is way more fun that what I should be doing…)
PK and I are big fans of a short-lived sci-fi series called “Firefly” that has been our favorite to quote of late.
Spoken by Zoe in the episode titled “The Train Job”:”Sir, I think you have a problem with your brain being missing.”
Also from “The Train Job”: (Mal stole crates from a train and later learned they contained medicine that would make life bearable for the people of a poor town)
Sheriff – “In these hard times a man might take a job not looking too closely at what that job is, but when a man learns all the details of a situation like ours, well, then he has a choice to make.”
Mal – “No, sir, I don’t believe he does.”
Really, I could probably quote word for word from all 14 episodes. We love it that much. Outlaw cowboys travelling the universe – what’s not to love? 😉
“Bummer!” I don’t know who said this, or where. But somebody must have said it. Especially about WTF disease. Good luck, Susie.
I’m on the same track as SS Nick. “The Sun Also Rises” is stellar! My entry comes from another tragic love story and was spoken by Clint Eastwood’s character Robert Kincaid in “The Bridges of Madison County”: “This kind of certainty comes but once in a lifetime.”
I also like the Steve Martin line, “Those French have a different word for everything.” Not sure which movie it’s from.
“We’re going back to P.” — Neil Patrick Harris’ character in Starship Troopers. You really have to say this line out loud. (P is the name of a planet in the movie, but that’s hardly relevant to the humor.)
Durn, I haven’t seen a movie in ages. My loss … I do miss them. Sounds like there’s some funny ones out there.
All I can think of is Captain Kirk saying, “And a double dumbass on you!” trying to be hip in 20th century San Francisco (Star Trek: The Voyage Home). There’s aways Dr. McCoy’s classics … “I’m a doctor, not an escalator” but that’s not from a movie.
A double dumbass on WTF!
Terms of Endearment:
Jack Nicholson: I feel really bad about breaking up with you.
Shirley MacLaine: Well, you’re lucky, then. Because I feel humiliated.
*************************
Keep the faith, dear. It is what keeps you going. (And maybe with a little help from your friends, and we are legion.) :-)))
Help isn’t a nasty four letter word. It’s okay to use it. And I’m here, an email away should you need me.
Favorite movie line?? I can’t think of a movie let alone a line from one.
I havent been around in awhile and I was hoping for some good news on your end. Your faith gives me hope for finding my own.
And Ill give you a favorite movie line, though not an opener.
“As soon as they turn the camera off he is gonna fuck that little dog”
From Shakes the Clown.
Not an opener, but a good one:
From the Orson Welles film, “The Third Man”
Harry Lime: Don’t be so gloomy. After all it’s not that awful.
Like the fella says, in Italy for 30 years under the Borgias they had warfare, terror, murder, and bloodshed, but they produced Michelangelo, Leonardo da Vinci, and the Renaissance.
In Switzerland they had brotherly love – they had 500 years of democracy and peace, and what did that produce? The cuckoo clock.
Oooh, I LOVE movie quotes! I’m swamped at work today, but I can’t resist taking a moment to add a few favorites to the list.
From Raising Arizona, one of my all-time favorite movies:
1st Parole Board Member: “There’s a word for people like you, Hi. That word is called RECIDIVISM.”
2nd Parole Board Member: “REPEAT OFFENDER!”
1st Parole Board Member: “Not a very pretty word, is it Hi?”
H.I. McDonough: “Naw sir, that’s one bonehead word.”
* * *
A few more from Raising Arizona:
“Son, you got a panty on yer head.”
“I’m okay. You’re okay. That there’s what it is.”
“That sumbitch. You tell him, I think he’s a damn fool, Ed. You tell him I said so – H.I. McDonnough. If he wants to discuss it, he knows where to find me: in the Maricopa County Maximum Security Correctional Facility For Men, State Farm Road Number 31, Tempe, Arizona! I’LL BE WAITIN’! I’ll be waitin’.”
“Mind you don’t cut yourself, Mordecai.”
* * *
Okay, just a few more, then I’ve got to get busy…
From Jimmy Neutron: Boy Genius:
Mrs. Neutron: Jimmy! You scared the bejeebers out of me!
Jimmy: Sorry ’bout your bejeebers, Mom.
* * *
From Clue, another of my all-time favorite movies:
“Communism was just a red herring!”
*
“Life after death is as improbable as sex after marriage.”
*
Wadsworth: Professor Plum, you were once a professor of psychiatry specializing in helping paranoid and homicidal lunatics suffering from delusions of grandeur.
Professor Plum: Yes, but now I work for the United Nations.
Wadsworth: So your work has not changed.
*
“Oh, whoever it is, they gotta go away, or they’ll be killed!”
*
Wadsworth: …and to make a long story short…
Everyone: TOO LATE!
***
Hee! That was fun, Susie. Thanks for starting my Monday morning off with a smile and a chuckle.
In other news, you are, as always, in my thoughts and prayers. I wish so badly that there were more I could do.
Love. Hugs. Prayers.
You’re doing just fine – that’s why it’s heroic. Have a wonderful day, Susie!! 🙂
“whip me, beat me, take away my charge cards.” From Spacecamp, said by I believe Tish (Kelly Preston) from 1986.