To everyone, If you could say anything-

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FeelingTooFarAway

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Hey Everyone,

I hope I'm not asking to much as a newcomer. BUT here it goes...

So I'm a speaker for ALS and terminal illness at my old school. Every year my old English teacher surprises students with my visit while they read the book, Tuesdays with Mori. I talk about what ALS is, answer question, emphasize that it's NOT a cancer, talk about what I've learned, and challenge them to question what they hold important in their day to day lives. BUT I'm still only 19. There's so much I can't answer about living. For a big change this year I wanted to be able to give these students more than just a few words from me. ALS affects everyone, but I'm not everyone. I'm just a small piece in my family's struggle a midst a sea of people struggling with ALS and living.

So if you could- PALS, CALS, and everyone from the ALS community... If you could say anything to these students about living, dying, growing, or anything else that comes with this disease what would it be? What has it been like for you? What would you share?

From,

Me
 

ottawa girl

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About dying:
Since my diagnosis, I have met countless angels, disguised as people. Helping me everyday. I am lucky in my unluckiness.

About living:
Those angels were there all the time... I never paid attention. I ran past them.


For me - This ALS thing is not about the going... It's about the leaving. Leaving those I love the most. I pray for faith. Everyday.


You are a great person for doing this! Thank you!:p
 

CGARS

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If you could choose between health, wealth, or fame.....
Always choose health, it's the only one you can't live without.

The one thing I will tell you, and it's no joke,
Be nice to everyone you meet, because you never know which one you will need to wipe your ass in the future!
Good luck,
Casey
 

zoohouse

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What I would like communicated to them is to imagine that they are the one with ALS, and how would they feel if family or friends stopped having a relationship because they want to remember them when they were up and about. And then treat the person with ALS the way they would want to be treated. My husband confided to me that he feels like he is already dead to his very large family, and he plans on living a long time yet, even if it means having a Non invasive ventilator, and that means living the rest of his life shunned.
 

Atsugi

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When you've got a short time to live, you discover just how UN-important most things are. Don't get stressed and upset over trivial things. It's just not worth it.

When you got a long time to live, you don't realize just how short life is. But you'll only be young once. So the first time life offers you an opportunity is usually the best time to take it. Don't forgo good opportunities while waiting for something better.
 

patrick123

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I wrote about six months into my diagnosis

From the shadow a beast lurks. I can't see it, but I know it's there
Do I keep my head low so he can't find me. Or do I run.
I can hear it growl as he takes my voice.
I can feel its breath on my neck as I gasp for air.
Every step I take he takes my strength.
Why is he there, I want to scream and cry out.
But I turn and come face to face with the beast.
I look into his eyes. He is uncaring, he has no soul.
And I know he is not stronger then me.
He may take my voice, but he can't silence my words
He may take the power of my legs, but I will stand against him.
He may take my hand my arms. But I will still raise my fist against him.
He may take my breath. But I will make the world hear me.
But he cannot take away my heart. He cannot take my soul.
He cannot take away my love from the lives I have touched.
These are mine and mine alone.

His name is AMYOTROPHIC LATERAL SCLEROSIS
 

hjlindley

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my heart , my brain and my soul haven't changed. The only thing that's not working are my muscles. I'm the same person and I wish to be treated as you always have treated me. I don't want sympathy or pity. Make me laugh, ask me a question, and talk to me.
 

Santa joe

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I would like to share my PALS story with your class. You didn't say what age group but hopefully they will benefit from this. My husband was once a professional Santa at out local mall. If you have access to Facebook - go to his page -Santa Joe - Goose Creek. You will be able to access links to our TV and local paper interviews. He can no longer speak or I would have asked him his thoughts. You are an amazing young women to help spread the word about ALS.
 

MaxEidswick

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Hello young fellow --


>So I'm a speaker for ALS and terminal illness at my old school. Every year my old English teacher surprises students with my visit while they read the book, Tuesdays with Mori. I talk about what ALS is, answer question, emphasize that it's NOT a cancer, talk about what I've learned, and challenge them to question what they hold important in their day to day lives.

Thank you for sharing this ... I know it is hard for you too.


>BUT I'm still only 19. There's so much I can't answer about living.

well, for 19 I think you are pretty cool. In fact, *awesome* :)

>For a big change this year I wanted to be able to give these students more than just a few words from me. ALS affects everyone, but I'm not everyone.

Well, from me you can tell them I wake up every morning around 3 AM, choking, wondering what part of my body will quit working next -- and I am in good shape so far! It would be so much simpler to just check out unexpectedly, but everyone expects us to fight the good fight. :-(.


>I'm just a small piece in my family's struggle a midst a sea of people struggling with ALS and living.

you are a bigger piece than you know. Just by this effort you are helping *US*. And I thank you!


you may have seen part of this during the Super Bowl:

My ALS research: Microsoft's first national Super Bowl ad might just bring a tear to your eye - GeekWire

these are too long to share with them, but they may give you some inside idea what we are facing. The first is about ALS in lay terms, the second is boring, and the third is about how we die:

My ALS research: ? ABC's of ALS (Part 1) - YouTube
My ALS research: ABC's of ALS (Part 2) - YouTube
My ALS research: ABC's of ALS (Part 3) - YouTube


Max
 

MaxEidswick

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my post went to the moderation blackhole, so hopefully it will show up. Regardless, I referred to you as 'young fellow', so if you are a young lady, I apologize :)!

Max
 

BrianD

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my heart , my brain and my soul haven't changed. The only thing that's not working are my muscles. I'm the same person and I wish to be treated as you always have treated me. I don't want sympathy or pity. Make me laugh, ask me a question, and talk to me.
I would want to say the same as above. And don't make assumptions about what I can or cannot do, and what I do or don't want to do.

I ran the equivalent of the pinewood derby for our church AWANA youth group for a number of years. But after I disclosed I had ALS, they didn't even ask me if I wanted to continue leading it. I absolutely 100% know they did that out of love assuming I too many issues with ALS, but I would have liked that last go at it.
 

ottawa girl

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@ Patrick

OMG - yours is a powerful message.

Write, write, write. You are gifted.
 

FeelingTooFarAway

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To give a little more about me- there is a post in the Caregivers section even though I'm only family. To Max! I'm a lady :) but fellow could also be translated as fellow comrade if you would like? Also Patrick- I love the poem. You are an amazing writer. Please, please, please continue writing!  To everyone though, past and future posts, I can’t thank you enough for sharing your thoughts. You’re not just helping these students but me as well. It’s wonderful to hear things my family and I can relate to. It’s a first for me and it gives me an incredible amount of solace. I know I’m not the only one dealing with ALS but sometimes it does feel like you’re alone.

AS FOR THE STUDENTS THOUGH---- For an age group- the students I'm speaking with range from freshman to seniors. My teacher has English classes with all years but he makes it a point to teach this story to everyone.

ALSO- If you guys have an activity you can think of that would simulate something to do with ALS that would be awesome too! I usually have them try to write their name without using they're fingers. It's comical at first but they really get frustrated by the end. I think they find it incomprehensible how someone going through ALS can laugh. But I find that the best way to cope.
 

BrianD

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Activity thoughts:
Open ziploc bag without fingers.
Have them tell a partner what they would like for their birthday without speaking or writing.
Sit completely still for 5 minutes but tell them especially not to scratch any itch.

Please check out the thread which shows how we laugh with ALS.
Http://www.alsforums.com/forum/comedy-humour-jokes/24650-fun-als.html
 

hjlindley

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put on heavy mittens and try to open jars, Ziploc bags, brush your hair out of your face,open the drawer,use a pair of scissors
 
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