I am a 20-year-old with a progressive wasting disease called spinal muscular atrophy that will eventually kill me. I invite you to laugh at my nightmare.

I am a classroom aide for a nine year old girl (third grade) who has SMA. She is in a wheel chair and on a ventilator. She has very little movement other than her index fingers and she knows how to speak, but cannot, due to limited mobility in her jaw. She amazes me every day with her awesome attitude and I feel so privileged that I get to be a part of her life.

My question for you is what can I do to make her days a little bit easier, more fun and give her the best educational experience that I can?

The most annoying thing for me is when people treat me like a baby because they assume that my physical impairment means I am also mentally impaired. I would imagine the case is similar for your student and probably even more so given her severe symptoms. My advice would be to always treat her like the intelligent young lady that she is and challenge mentally as often as possible.

That being said, everyone is different, so your mileage may vary.

would you mind explaining what spinal muscular atrophy does, and how it made your life growing up different from 'healty' people?

There are two proteins in the body that are responsible for muscle production and maintenance. My body is lacking one of them, so when I was young I didn't grow very much muscle, and now the muscle that I do have is slowly wasting away. Physically, you can think of me as a big baby in a wheelchair.

Being extremely weak and in a wheelchair made growing up very different than most other people's lives. I write about many of those differences on my blog.

Additionally, as my lungs grow weaker, every illness becomes a life-or-death situation, since my body has a very difficult time removing mucus from my lungs. Most people with SMA eventually die because they catch a normal cold, and it turns into a severe lung illness that they are unable to fight off.

Mentally, emotionally, and socially, I am no different than anyone else! And it is very important to me that people understand that. Thank you for the question.

So if minor illness become life threatening for you does that mean at some point you going to have to live in like a "safe" environment where there is minimal germs?

Does this disease make it really hard to find a partner?

No. Yolo.

What is on your bucket list?

Here is a sampling...

• Play outside linebacker for the Philadelphia Eagles (Eli Manning, I'm coming for you)
• Circumnavigate the globe in only my wheelchair
• Get onto Ellen

Perhaps Reddit can help with at least one of those? Ellen maybe? I dont know...I'm on the other side of the planet but good luck!

I want to see Shane do this! Ellen, Ellen, Ellen!

Shane you should send her an email here, or people on reddit should submit him :) http://www.ellentv.com/be-on-the-show/

edit: I just submitted the link to this thread with your "bucket list", I hope it works!

We're launching a twitter bomb at Ellen on Thursday April 11th. Feel free to join us, and if you can you can join our Facebook event:

https://www.facebook.com/events/629758860373302/

I am 20. I have SMA Type II. My writing and attitude is very similar to yours. That being said, reading your answers made me feel like I was cloned and decided to write an AMA. It's both shocking, strange, and slightly comforting knowing there's a second "me" out there.

To the reddit community, I just wanted to say that SMA is a VERY spectrum-like disease. Even Type II, I've known people who have not been able to eat solid foods (more severe end of spectrum) to people who are mostly independent but need help with certain physical things (this is where I am on the spectrum).

Shane, it's refreshing to meet someone with the same condition as me. I've always felt like my life struggle was unique in that I am not paralyzed but require help in a lot of things. My question: how severe is your SMA? Can you use your fingers well? Can you eat solid foods?

Answer as many questions as you can, reading about someone else with my condition is really eye-opening for me.

Hi! Running a little short on energy but wanted to make sure I answered your question and said "Thanks!" for sharing. I am somewhere in the middle of what you described. I need a lot of assistance, but I can still do things like use utensils (albeit in a limited manner) and chew.

I feel ya, dude. The nickname of my disorder is "The Suicide Disease' (Trigeminal Neuralgia) and the only thing keeping me from living up to the name is having a sense of humor about it. hugs

EDIT: I love answering questions about my disorder, but I have to go to bed. Monday comes quickly, and a new work week comes with it. Remember this the next time you see someone: Though they might look healthy enough, they could be just like me. A lady who writhes in agony hiding it from everyone in public because it makes them uncomfortable. Invisible illnesses exist, and the more I can bring light to them, the better I feel.

return of the edit: Some folks have PM'd me about this, so I'll do an AMA if enough people want to know about this shit. I have to go to bed for now!

It's awesome that you can find humor and that it is helping you throughout your life. Keep it up!

Are you scared of the future?

For a long time I was terrified of my future. But over the past few years I've realized that being afraid of what's happening doesn't do anything to improve my situation. I can sit in my bedroom and cry to my lonely self that I might die younger than most people, or I can go outside and have an awesome time laughing with my friends. Neither option will make me live any longer than I'm going to. But having fun and not focusing on my fears is a MUCH better use of my time, so I choose to do that! Thanks for asking!

Good sir, I follow you on tumblr and I must say you bring me chuckles on days when I am down.

Thank you so much, that really means a lot, and I'm glad that you enjoy my blog!

Original recipe or extra crispy

Original recipe, but only as a matter of necessity. My jaw muscles get too tired from extra crispy.

I will NOT laugh at you, you sick bastard!

Suit yourself Grumpy McGary.

You say it'll eventually kill you. Do you know a range of time that you are most likely to die from the disease? Also, how do you spend your life? In full care 24hrs a day, working a normal 9-5 job or doing everything you've ever wanted to, knowing your time is precious? Thanks.

Edit: I see now that you said you are in a wheelchair.

The prognosis for SMA Type II is for most individuals to die within their 20's. I know of people who have died as teenagers, and I know people who are in their late 40's with children who are still alive and kicking...well not actual kicking.

From the very limited knowledge I have of this condition and of medical science, it seems that some kind of gene therapy might be the only avenue of research with the hope of finding a real cure. Are there other possibilities currently being researched and if not what are your thoughts on the ethical dilemmas of manipulating human DNA?

There is lots of research going on in the field, and that is one of the biggest reasons that we are trying to raise money to support research with my nonprofit. Scientists are getting closer than they ever have been to finding a cure for many of the muscular dystrophy diseases.

I'm so glad I saw this post, I will follow your blog immediately! So hysterical!

I blog about my own chronic illness adventures and I have to agree, humor and positivity trump everything else by far, and you have a way with both that is just lovely! I'm so excited to start following your posts. Thanks for sharing!

Thanks, it's great to hear that! Make sure you let me know where your blog is so I can follow you back!

My fiance had a terminal disease and her attitude was a lot like yours: live life to the fullest, laugh, love, never waste a minute. It made her a lot of fun to be around, even on the days when her disease made everything difficult and miserable. It seems like everyone I've known who faced this sort of morbid challenge was just an amazing person.

Do you think your personality developed into what it is because of the disease, or do you think you're just one of the "lucky" ones who got born with a debilitating disease and a personality able to cope with it? Do you know any people with your disease who are not so good at handling it?

I'd like to think that I would have the same personality if I didn't have my disease, but a lot of it is defined by having the disease. Honestly though, a lot of who I am is a result of my family and friends, so I have to give them credit too.

What was it like growing up? Did you go to a regular school?

Great attitude, btw :)

I never had any problems with bullies or anything of the sort. Making friends was easy. As soon as kids got past the initial shock of me being in a wheelchair they quickly discovered that I was just like them. And yes, I did go to regular schools (I am in college now). If you read my blog you can see more stories I've written about growing up and going to school.

Wow. After reading (and giggling) through your blog, I come to the conclusion that you and Ellen would make a fantastic combo. I'd SO watch that. Keep it up, Mr. Awesome!

If you have a Facebook account you can join our event page for the twitter bomb we're planning on April 11th to get Ellen's attention.

https://www.facebook.com/events/629758860373302/

I follow you on Tumblr as well, you are hilarious, and I hope you continue trying to have a good time getting through this.

Thanks for following! I have a ton of things I'm doing in my life right now, so look forward to lots of new posts in the upcoming year.

It isnt so much about you as it is for me. I feel spoiled being annoyed at studying for exams or cant lose a bit of weight or wonder at what job I might get when in reality these arent even problems compared to you. I like it when I am faced with reality: other people have way tougher shit than I have to deal with so I should shut up and work through it.

Perspective can go a long way to help you gain an edge on your problems. That being said, it absolutely shouldn't be a way for you to belittle the difficulties you experience. Everyone has their own problems to deal with and regardless of how big or small they may seem to others they can still seem impossible to the individual. If you can take anything from my life, it should be that a positive attitude and sense of humor can go a long way toward overcoming your own problems no matter what they are.

at what age did you realise that humour is the best way to overcome your condition, and how did you come to that conclusion?

4 days after my 13th birthday I said my first joke that made people actually laugh. I haven't looked back.

Seriously though, I have always been interested in humor. When I was 9 or 10 I wanted to be a stand-up comedian. I used to ask for joke books as birthday and Christmas presents and I would spend my time reading them to my family.

Hey Shane! What made you want to start a blog?

I just wanted to make people laugh. It is one of my all-time favorite things. Realizing that my stories were inspiring people to approach their lives more positively just seemed like a icing on the cake. I will never say that I write my blog "in order to" inspire people, but I think it's pretty awesome when people tell me that story I wrote gave them a new perspective :)

Can you not drink much milk? I heard that it gets mucus in your lungs. (originally said "lunges")

I've never tried lunges after drinking milk, but then again I've never tried lunges any other time either.

[deleted]

Thank you for being sensitive when referencing my inevitable croaking. Before my body is rotting underneath the ground I would like to get married and have children. I'd like to travel the world with my friends and family before I expire. Finally, before I become a professional daisy pusher, I am going to change the world.

Do you entertain the idea of biomechnical whatzajigs to keep your body running? Or the advancement of them happening quickly enough where it could be a realistic option?

I certainly have entertained the thought of replacing body parts with mechanical equivalents, though most of those thoughts revolve around parts of my body which aren't necessary for my survival.

I wish people would realize the level of emotional freedom you've achieved and strive for that, because those of us without the unique challenges you face tend to put ourselves in emotional cages of varying levels. You really seem to have no emotional cage, or a very trivial one.

How do you handle your low points?

Thanks man, you're doing a lot for me today by spending your time here. I really appreciate it, and I will join you laughing in the face of that bitch-ass SMA of yours. BWAAAHAHAAHAAHAAA! BITCH-ASS SMA.

Edit: To clarify, I originally included a sex question, but dialed it back to part two only. Aaaand he caught part one and answered it like a boss. Thanks for coming through on that one man.

What are you suggesting? ;)

There are a small number of things that I'm not interested in airing publically very often. I write about them from time to time, but overall it's just a topic I avoid.

On the real, my penis works fine, since that's probably also part of what you're asking.

[deleted]

I'm going to fight as hard as I can to live as long as possible because I love being alive. I have accepted that I am going to die and that it might end up being earlier than I would like. As to what the process was like, it is an ongoing one, just as it would be for anyone else.

Do you ever think "why did this happen to me?" And how do you deal with that?

Even though I am a very positive person, there are times when I can't help but get down about my situation. This usually happens when I'm trying to fall asleep. There is no answer to the question "why me" and that is the most frustrating part. Ultimately I make the choice to not dwell on this fact for too long. As I've said before, life is too awesome to waste time worrying about the things you can't change.

[deleted]

I got my first wheelchair when I was about 2 years old, which is about the time that all of you were learning how to walk. My preschool teachers tell me that my favorite thing to do when I was learning how to drive was to crash into the walls.

That sounds awesome! As someone who has worked for a daycare, though, I probably would have freaked out if a kid were running into the walls all the time.

Yeah, my teachers used to get pretty mad at me about it. I had to learn how to act responsibly at a pretty young age. Still haven't mastered that particular thing...

Can you/do you drink alcohol or go to parties?

I can go to parties, I can drink alcohol...well, just not yet. Ask me again at the end of May.

Fucking love the sun-lounger cushion / pizza box goalie outfit. I'm assuming you're probably one of the best goalies around! I hope that you make a few more documentaries. Also the mermaid picture of you is incredible!

Second, there was a paraplegic that did an AMA and said that he dreamed of running. Your documentary said you never crawled, so I was wondering do you have ever have dreams when you're walking or running etc?

This should be at the front page soon I hope, then next stop Ellen, make sure that the photo of you in the pool is on TV!

Good luck mate! J

In most dreams I've ever had I am not in a wheelchair. I do things like surfing, running, and jumping. Recently that has begun to change, most likely as a result of getting machine guns attached to my wheelchair. Probably.

What is the best thing you've experienced in your live ?

I got to meet Anthony Green of the band Circa Survive a few years ago, I sat side-stage for one of their shows in Philly, and now we are friends and he volunteers for my non-profit. All of that is the collective best moment of my life.

Whats your favorite meal time of the day? What does your favorite meal consist of?

Dinner. Olive Garden.

So are you planning on living on as long as you can regardless of quality of life or do you plan to quit before things get too bad?

I'm planning on living as long as I can, no question.

If you never knew about your [and our] inevitable death, would life be easier?

I suppose thinking everyone was immortal would make life a little easier, but it's almost too hypothetical to talk about. I'm not immortal, so I'm doing everything I can to make my time here worthwhile.

Have you tried medical marijuana for a little extra giggles in your life?

The only real benefit it would have for me is increasing my appetite. Since my disease doesn't cause any type of chronic pain I have no real use. I giggle pretty much all of the time anyway.

Why would I laugh at you?

Because my life is funny, isn't yours?

Have you experienced any hallucinogens?

What was it and how has it affected you?

Can't say that I have and I have no desire to change that.

Hang in there man. New cures are being found everyday, who knows what tomorrow will bring.

Knowing that a cure could be found in my lifetime does give me a lot of hope about my future, but I don't let that affect the way I live my life.

haha....ha........ha......... wait, this isn't funny at all.

I beg to differ, read my blog. :)

How often do you break down when you are unable to fool yourself into believing that this "helps" any longer? Or is it a full-time knowledge behind a stage show?

I'm not fooling myself into anything, nor do I attempt to fool anyone else. I have moments where I get legitimately pissed off at my situation, but overall I am lucky enough to have great friends and family supporting me, so it is difficult to stay upset for very long.

damn dude, hope everything gets better for you. can't even fathom going through this. im guessing you spend alot of time on the computer..using ubuntu will make your life better :)

Thanks for the suggestion. I have never heard of it, but I will definitely check it out!