Mostly Questions

I grew up feeling like everyone around me knew who I was.  And I knew them.  At least on the surface.

I think I like that feeling.  There's a familiarity and comfort to it.

As life goes on and the people around you change, that comfortable feeling can go away.  Meeting new people provides new opportunities to define yourself. 

But what if you've changed?  What if who you've become is different from the person you used to be? 

What if who you are is defined by a single thing?  How do you tell them that you used to be so much more?  

Exhausted

It's that feeling when you've had a hard work out.  You hiked a mountain, skied all day, or went for a long run. 

You feel exhausted, and satisfied.  You feel a sense of accomplishment for the long day that is now behind you.  You feel it's time for a comfortable seat, a hearty meal, and a beer.  It's a great feeling and I'm not sure I remember what it's like.

 

I never recognized the sense of accomplishment you get from something like that.  It's great to know you got out and did something with your day.  You “got after it”. 

I haven't been able to replace that feeling.  I miss it.

Life Goes On

When I was first diagnosed I panicked.  I thought that if I was going to do all of the things I had planned for my life, I had to do them immediately.  I wanted to find the love of my life, buy a house, start a family, etc. etc., all as immediately as possible.  I didn't know how long I would have.

It's been two years, so I seem to have found some time.  But I still want all of those things.  It's tough to put a time table on life.  Life isn't meant to be planned out.  It should just take its course.

But if you’re not sure how long that course is, how do you breathe easy?  How are you sure you have time for it all?  I guess I'll just take it one day at a time.

Jealousy

I look around at my friends.  I look around in the crowd.  Everyone looks okay.  Everyone looks healthy to me.  But I'm not. 

I didn't used to be jealous of anyone, but it seems things have changed.  I see an old woman in the street taking her morning walk and I am jealous.  I see an obese guy wearing a sweat suit in the grocery store and I am jealous.  I'm jealous of everyone I see.  

On Perspective

If there's one good thing to come out of going through something like this, it is perspective.  I think if someone could go through a crisis like this, and recover, it could be the best thing to ever happen to him. 

It's hard to appreciate everything in life if it's always been there.  Sometimes something has to be taken away before its meaning is realized. 

Perspective is a powerful thing.  It can make you see the big picture.  It can make you see how fortunate you are.  You won't sweat the little things as much because you'll realize just how little they are.

 

So the next time something goes horribly wrong and “medium-rare” turns out closer to “well-done”, try to chill the fuck out and remember that the world isn't against you.  It's just a hamburger.

Stairs

I've lived in a lot of 2^nd and 3^rd floor apartments over the years.  I never gave it a second thought.  I never once worried about whether a place was upstairs, downstairs, or otherwise.  I lived on the 3^rd floor for 2 ½ years in college, and no amount of alcohol ever caused me to fall.

It's difficult for me to imagine.  I watch in disbelief when I see people casually jog down a flight of stairs with their hands full, even turning to say goodbye.  The thought of falling never enters their minds.  You'd think I'd remember what that's like, but I don't.  Not really.  I see a flight of stairs and look for the handrail.

Drinking in Public

A physical therapist once told me that when drinking in public, I must be careful.  What she meant was that I may appear to be very drunk when in fact I am not.  Stumbling around with slurred speech will give that impression.

 

Of course I also realize that this could be a handicap in other areas.  Getting pulled over after a drink or two kind of scares me.  I guess I’ll ask to skip the sobriety tests and go straight for the breathalyzer.  

Don’t Rush to Judgment

If you see a young couple eating in the hotel breakfast room, and the man asks the woman if she’d mind getting him a cup of coffee, don’t assume he’s a lazy prick.  Maybe he has trouble carrying hot beverages across the room without losing half on the floor.  #fuckyouforgivingmeadirtylook

Use Your Abilities

You were given the ability to run, jump, lift heavy objects (more than 12 fluid ounces) etc.  Get off your ass and use these abilities before they’re gone.

Don't Be Jealous

Don’t act like you’re jealous of me.  Don’t ever imply that it must be great to be on disability and “not have to work”.  I hate to watch your career move forward while mine has stopped.  I think about all that I could have accomplished and watch others with envy.

And don’t pretend like I’m getting off easy by not having to do physical labor; not helping out.  It kills me not to help out.  That soreness you get after moving furniture all day, or chopping wood for the winter, there’s satisfaction in that.  That feeling bestows a sense of accomplishment, and a sense of strength. Watching from the sidelines only brings a useless feeling to mind.

So don’t be jealous of me.  And if in some sick, twisted, fleeting moment you are jealous, keep it to yourself.

Remember to Thank Those Who Help

Inevitably as time passes and you lose the ability to complete certain tasks, you must ask for help.  It can be difficult to fully appreciate the help you receive from friends, family, and those around you because you truly do not want their help.  Whether it is carrying a hot cup of coffee, or lending a hand on uneven ground, you wish like hell that you could do it yourself, the way it used to be, the way it is for everyone else.  The lack of control can cause a level of frustration that is difficult to imagine, and equally difficult to hide.  

But remember the kindness of those around you.  Remember to thank those who help.  They may brush it off with a "No Problem" or similar response, but to you it's a big deal.  Be sure to voice your appreciation.  Make sure their compassion doesn't go unnoticed.  Like it or not, sometimes you need their help.  

From the Doctor

"Wobbly legs and weak arms are a bad combination."

-As said during my last doctor's visit

Just Because...

Just because I can walk and talk doesn't mean everything's alright.  It doesn't mean that I don't have a disease that has taken away so many things.  So don't ask if I've been golfing this summer, or if I've been hiking mountains.  I haven't.  And don’t act surprised when I choose to sit on the sidelines instead of joining the game.  Or when I get frustrated with my abilities and want to give up. 

If I choose to do something, or not to, there is likely a reason.  I've thought about it more than you know and made my decision.  I can tell you if you want, but I bet you'd rather not hear it.  It's probably easier for both of us that way.  

Special Treatment

I don’t like to ask for help.  Believe me I’d rather do it on my own.  So if I do ask it means that I really need it.  Sometimes I do need special treatment.  That’s the reality of it.  If it looks like I can’t keep up or maybe I need a hand, take a hint and offer to help.  I’ll always remember your kindness.

On Identity

Identity isn't easy to put your finger on until you are forced to confront it when something changes who you are.  What you do, (enjoy doing, are able to do, etc.) defines, at least in part, who you are.  It can define who you spend time with, the things you have in common with others, and even the conversations you have.  In short, taking away the ability to do the things you love alienates you from the people you have grown close to.  It makes you feel like you’re sitting on the sidelines watching everyone else enjoy their lives. 

I Don't Want To Hear It

Don’t tell me you’re depressed.  I don’t want to hear it.  Seriously, if you are healthy or even “potentially healthy”, and you’re telling me you've been down, you can fuck right off.

Potentially healthy means that in one way or another, you have chosen to be unhealthy, or less healthy than you could be.  If your choices have caused serious health problems maybe you should reexamine your priorities and try to imagine not having a choice.  Some people would kill to have a problem they could overcome.  

I'll Open with a Joke

From the "Stupid Questions and Comments" series:

From a tech at the hospital, “Well you’re young for an MRI.”  I don’t know if this is an exact quote but aren't folks who work in the health care field supposed to be compassionate?  Yes, I am young for an MRI, and I’m also fucking terrified.  Keep your mouth shut with your stupid rhetorical questions.  Oh yeah and I don’t care that you’re tired and weren't thinking.  It doesn't take much energy to NOT make an asshole comment.

A Bit of Background

About two years ago I was diagnosed with ALS at the age of 27.  I'm not going to tell you how fucked up that is; you can look into it if you like.  As of right now I am able to walk, talk, and for purposes of this blog, type.  I've created this mostly to bitch and moan about the day to day challenges I face, to poke fun at society, and perhaps to provide an uplifting perspective from time to time.  Each day I will post a paragraph or so of whatever I like.  Hope you enjoy it.