i don't want to know when or how i'm going to die...

[whatsupwithat]

i woke up this morning knowing that a medical test that i had this afternoon would either confirm my recent probable diagnosis of als aka lou gehrigs syndrome or tell me and my doctors i didn't have it. the als diagnosis has been a coin toss in the air i've been watching for the past month or so. all my symptoms lined up with the disease.

als has no known cause, no cure, no treament. and it's more than just a death sentence. the average lifespan after diagnosis is two years. but it's not really life you'd be living. you'd retain your cognitive abilities but you'd watch your muscles quickly waste away to nothing. you'd no longer be able to move or control anything on your body. you'd need round the clock care. someone to roll you over at night. pick you up to go to the bathroom. you wouldn't be able to talk. you'd drool continuously because those muscles would stop working too. you'd need a ventilator to breath, a feeding tube to eat. eventually the ventilator wouldn't even be enough. you'd asphyxiate and die. and through all of this you, your brain, would be the same. you would see and feel all of this.

this is what i woke up to this morning. how i got out of bed i don't know. everything around me wasn’t real. it was like I was numb to the world. or it was numb to me. a few friends of mine checked in on me to make sure i was going to be alright. one friend, her name's cat, had marked the date on her calender and called me from california with the most beautiful words. a girl who i never met, but who knows a friend of mine, reached out to me these past few days and today, as well. and another friend came with me to the doctor's office. talk about vividly seeing who really cares for you, who has beauty and compassion in them...it was very vivid.

they administered the test. i didn't know what the blips or static or whizzes meant. to me, it was all a blur. i felt very alone. finally, the doctor pulled the last needle out of my back, and put it away. he turned to me and told me i didn't have als. i didn't have what i was led to believe i had...what i had begun to believe i had.

i cried and hugged the doctor..again and again and again. and then i smiled for the first time in weeks, truly smiled deep from inside.

i don't know why i'm posting this here. i'm not looking for sympathy. the time for that is over. i guess i just want to share what happened to me. I wanted to share in some small way what it’s like to be a textbook example of existentialism, to be a living sisyphus, to be a dead man walking.

have any of you ever had this experience?

[Felicia Katt]

glad you will be ok :)

FK

[TheOne1]

haven't seen an up-beat post in awhile..thank you for sharing, and god bless

[Ecstatic]

E, I am so relieved to hear that you don't have ALS! Man, I can't even imagine how badly that would suck. Truly, I am happy to hear the good news.

I can't really compare any experience of mine to that. I did nearly die in a terrible car accident 25 years ago, which left me with a bad back for life, but I pulled through with a concussion, cuts, back injury but otherwise relatively OK.

I also have some idea of what it's like to have a condition for which there is no known etiology, no cure, no treatment as such. The condition is more of an inconvenience, however: I have Meniere's Syndrome, a set of related symptoms with, as yet, no known cause: nausea, vertigo, tinnitus, loss of hearing, and pressure in the ear. But as uncomfortable as it is, the only real danger would be an attack of vertigo while I'm in a vulnurable position, like working on a ladder or a roof. (Incidentally, the symptoms come and go, without rhyme or reason.)

Best always,

E

[hondarobot]

Whoa. Glad to hear things worked out, that's a pretty heavy deal. Glad to hear it wasn't ALS.

I've been in numerous near death encounters, but they were always of the "Oh, shit, I can't imagine I'll live through this" variety. Immediate and massive sorts of deals, the waiting and not knowing would be bad.

Oh, and I actually did die once. It sucks. I was lucky and got better though.

Live.

:)

[whatsupwithat]

Thank you, Felicia, One, E, and Honda! It's weird to be alive again. :)

I'm alive! yay!

[mbf]

well WUWT , you share this because this board has become your web-home of some sort I d guess and because some peeps on here care for others.

welcome back to a state of beeing alive!

[Oli]

That's great news e, congratulations.

http://i12.tinypic.com/67rybyt.jpg

Now blow out your candles, and celebrate your Rebirthday!

[whatsupwithat]

well WUWT , you share this because this board has become your web-home of some sort I d guess and because some peeps on here care for others.

welcome back to a state of beeing alive!

It has sort of become a web-home of sorts, sort of. :) How that happened, I don't know. But thank you for your kind wishes.

And Oli! A cake! Thank you. Yep, it's my first rebirthday! yay! :)

[mikejones]

Glad to hear it bro!

[whatsupwithat]

Thanks Mike and M77! :)

[T5000]

I glad to hear you are alright. It makes you really appreciate life even more and no matter what kind of drama thats going on at least you have your health. Dont know if im making much sense or just babbling on but I am happy you are well!

[whatsupwithat]

I glad to hear you are alright. It makes you really appreciate life even more and no matter what kind of drama thats going on at least you have your health. Dont know if im making much sense or just babbling on but I am happy you are well!

makes lots of sense. a whole lot of sense. thanks for the kind words. :)

[Dina Delicious]

I LOVE YOU
im so happy
happy tears havent fallen from my eyes for sometime
see you soon
Dina Marie

[alphanumeric]

I'm glad your ok

[SXFX]

The last time I felt alive? Really alive? I don't know?
Maybe when I was flying threw the air when I had my motorcycle accident this past spring.
Maybe? I don't know.
But mate thank your lucky stars you'r ok.
Maybe make a donation or two just to cover your bases incase there is some one above?

[whatsupwithat]

I LOVE YOU
im so happy
happy tears havent fallen from my eyes for sometime
see you soon
Dina Marie

Thank you, dina! aww...now i'm crying tears of happy. :)

[whatsupwithat]

I'm glad your ok

Thank you very much. :)

SFSX

Words of wisdom there. I learned so much about als and the people who are suffering from it. I can't tell you how much time I spent perusing the various als sites/forums. I learned much about humility and true strength by reading their words. Donations are already on their way. :)

[Jericho]

Hey, glad you got the right result. :)
Can only imagine the sense of relief you're feeling.

[whatsupwithat]

Hey, glad you got the right result. :)
Can only imagine the sense of relief you're feeling.

Huuuuge relief.

Thank you! :)

[FiremanforTS]

As a paramedic I have seen ALS alot. It's a terrible thing.........i'll leave the details out.

Glad your ok.

[ottorocket]

My mechanic just died from ALS...pretty trippy cause he seemed totally fine up until he passed.. Eric...you lucky SOB...go grab a beer and hug someone...lol Thanks or sharing your victory! Its not your time

[hwbs]

well no beer but a big tub of ben and jerry's ?

[DJ_Asia]

Thats the best news ive heard in awhile! You know you have been in my thoughts and im glad the worst case scenario turned out to be just a scenario...BUT...if its not ALs then...????

Keep me posted mi compadre

[Coroner]

Damn, E! You really scared me because I had this picture of Jason Becker on my mind. He was one of the best guitarists ever if not the best and has ALS since the early 90ies. I´m glad you´re doing fine and as I was reading your text, word for word, I hoped I won´t read the bad news. And again, I´m glad you´re ok and you rock, man! Cheers.

[Bandyspring]

Good to hear everything turned out for the best. Now to make the best of that turn out. Having stared death and fear down, you're in a rare position to truly go after what you want and have more chance of success with it. Remember always your desire to live and to not have the disease, harness those thoughts and what inspired them when life looks less than pleasant. Here's to hoping further good news is on the way, and to making the most of your rediscovered inner vibrance and zest for life.

Regards,
The Negotiator :wink:

[Rogers]

That's very good news indeed, whatupwithat, A.L.S. is effectively a death sentence. You did however seem to be pretty sure that something is/was wrong, which leads me to point out that A.L.S. can mimic a few things including lyme. I hope the docs see you right. And I agree with you, dropping dead thanks to a massive coronary after a relatively long and happy life is way I hope to go too. Preferably during the process of love-making. :P

[DJ_Asia]

Good to hear everything turned out for the best. Now to make the best of that turn out. Having stared death and fear down, you're in a rare position to truly go after what you want and have more chance of success with it. Remember always your desire to live and to not have the disease, harness those thoughts and what inspired them when life looks less than pleasant. Here's to hoping further good news is on the way, and to making the most of your rediscovered inner vibrance and zest for life.

Regards,
The Negotiator :wink:

Very well written and oh so true!

[whatsupwithat]

So many beautiful posts from so many beautiful people.

FiremanforTS
ottorocket
DJAsia
hollywoodbuckstrap
Coroner
BandySpring
Rogers

Wow. I'm truly humbled by all of your thoughts. I don't even know how to respond except to say that the moment you took to write down what you did meant a lot to this guy in nyc. A lot. Thank you so much!

[peggygee]

E, I am so very happy to hear that the results
of your tests were favorable.

As an aside, one of the interesting paradoxes of
life, is sometimes it takes our nearly dying, before
we truly learn how to live.

[Luna555]

Glad you are okay!

Love,
Luna


well no beer but a big tub of ben and jerry's ?


Yep he should...He probably already did. Umm those yummy ice cream with mint chocolate. I am craving some myself. Lol

[whatsupwithat]

E, I am so very happy to hear that the results
of your tests were favorable.

As an aside, one of the interesting paradoxes of
life, is sometimes it takes our nearly dying, before
we truly learn how to live.

thank you, peggy. yep. time to live! :)

[whatsupwithat]

Glad you are okay!

Love,
Luna


well no beer but a big tub of ben and jerry's ?


Yep he should...He probably already did. Umm those yummy ice cream with mint chocolate. I am craving some myself. Lol

ha! love you, hon!

you and hollywood know me far too well. :)