Forget the stained glass window

I’ve decided to share.  The Devil’s Advocate now will have ample evidence to prove I’m not worthy to join the ranks of saints.

Because I was totally spotless before, right? 

There is a line in Harry Potter 5 that I want to highlight, and they do a good job in the movie too.  It’s actually quite trite, and heavy-handed, but for a young audience, it needs to be.  Tolkien only touched on it in passing but did convey it in a way adults can understand if they are paying attention.  Anyway, it’s the bit where Harry is all hormonal and depressed and tells his friends that they don’t know what it’s like, fighting for your life with someone or something that is trying to kill you.  Hermione responds that it is true, so why doesn’t Harry share his experiences with the group?

Ok, it’s heavy-handed because what teenager is going to share in front of a huge group in a big space?  Yeah, exactly, fiction, with the logical thought progression written by an adult who understands the value of communication.  What probably would have happened to open Harry up more would have been over drinks or around a fire late at night.  In the late and dark hours, in small groups, teenagers open up.

Tolkien hits the adults.  You can’t know what it is like to carry the One Ring, unless you have carried it.  And even then, length of duration matters, so much that those who carried it are changed forever and can’t go home again.  Those like Sam Gamgee who bore it a little while are more empathetic to those affected by it.  Might even have some scars from it. download (2) But can’t really understand fully the weight of the Ring.  It’s like America in World War I.  Yeah we came and kicked ass, and even spent time in the trenches, but we didn’t live through what the British and French did.  We can empathize, but they as a people were forever changed.

That is why cultures are different, and you can’t just implement a culture on people.  It’s why it takes a while to assimilate, and conflicts arise if too many are not assimilating.  But that is another post about the European Union.

No, the scar, burden, experience, whatever, here, is Lou Gehrig’s.  You can’t know what it is like unless you live it.  And frankly, it sucks for all parties involved.  I can’t explain it to you, I can only have you talk and try to help you understand.  And unlike the saints or the doctor who’s book I recommend, I’m not really happy about each new stage of development.  Frankly, I’m no Saint.  So I am going to tell you EXACTLY what goes on, and some of the stuff that I can remember. image1

You see that picture? That’s the office, where I spend most of the day.  I’m in a great chair, because I can still shuffle around, but the desk is too small.  My legs get really cramped, so periodically I turn and stretch on Lively.  When the time comes I am inLively full time, I will have to rearrange.  But for now, I need a desk so I can rest my cup against it, and use a mouse.  This whole setup generally ends me the day with tight hamstrings, a pain in my back, and a sore butt.  What?

Notice how my head is on my chest there? Unless I am using a brace or sitting differently, this is where my head goes.  I don’t have muscles to hold it up.  In this position of my head, I’m reduced to the characters in Star Wars of the mobility of C-3P0, and the verbal chirping of R2-D2.  Let me tell you, trying to communicate when you can’t lift your head is incredibly frustrating.  I know it frustrates Mel.  She’s trying to walk me this way and that and I can’t tell her I can’t move because I can’t see out of my left eye because of ALS acid tears.

Yes, acid tears.  And unless I let go of her arm and wipe my eye with my right thumb, I have to keep on.

Ok, then walking.  You know how sailors used to walk, with a rolling gait, shifting their weight foot to foot to be ready for the roll of the ship?  They roll their top half one way and the other to balance?  Yeah, that’s me.  I need a lot of space to walk, and the best way to assist is to be in front.  But, I have no reflexes.  Or should I say, I overcompensate for any imbalance by overcorrecting the other way.  So if you pull, even a little bit, I’m losing my balance. download (3)

Let’s talk about arms.  I have to use both arms to lift one up, and it’s getting harder.  Mel only fills the cup up a third, and it’s getting heavy, so maybe only coffee in the feeding hose in the future, along with hard liquor.  Because we talked about too much carbonation in the feeding hose!  I can’t grip things, or hold things unless they are looped around fingers.  Left hand is useless, and sometimes I need help positioning it.  If it’s even a little heavy, even my phone, I probably can’t hold on.

It’s very difficult to eat in front of people.  Or drink.  I can’t seem to lift my arms or get a seal to drink with.  So I don’t do it, and please, don’t make a fuss about it, the last thing you want is to have to clean me up!

What else do you want to know about?  Communication.  Ah yes.  Look, I’ll be blunt, I sound like a stone drunk person.  It’s literally only possible for some people to understand me, and the list gets smaller.  But it also means I keep more to myself, hence the office.  If I try to join in a conversation, I’m not understood.  If I try to type into the Tobii what I want to say, the people I was talking to have moved on.  My brain is much faster than the computer, and I can’t program what I might say because I have interests from Heaven and the afterlife and The Mystery of God, all the way down to fart jokes.  download (4)That’s a lot of topics!!!  So, writing emails and blogging and social media is the way out.  One of my sisters has started randomly emailing me, so we have fun back and forths about nothing.

In short, I don’t want to be rude, but I can’t talk, and if I try to make myself understood, I’ll be out of breath and you will feel bad that you couldn’t understand.  It’s ok!  I love you, and I probably was trying to make a joke.  Just assume that, and everyone will be laughing!  But you have to know, I’m so frustrated I can’t talk, I want to dialogue, I want to learn and share, but it is…

Sleeping is tough, I don’t move very well so positioning my head and legs hurts.  And I am stiff in the morning.  I already talked about getting dressed and showered and stuff.  That is something I know is inconvenient.

Oh, let’s talk about the word burden.  I had a chat with Mel and the gold squadron leader Laura, and they brought me to task about me knowing I’m burdensome. So, let’s clear this up.  I know that everyone is doing this service out of love, and out of love I am trying to accept the help.  I’m not thinking that it would be better if I were dead, ok?

What I am talking about is how much a Pain in the ass it is to care for me.  Out of love, I wake Mel up to help me at one AM.  She is then tired.   That’s a pain in the ass.  Or what about parenting?  You ever play good cop bad cop by yourself?!  I used to be the disciplinarian, but now the kids don’t understand me.  You think that isn’t a pain?  It is, and even if it is done in love, I still know it’s a pain in the ass, and I feel like that Get a Job Offspring song.  

Ok, I’ll leave this there.  To bring it all back together, I know that like Harry Potter’s friends, Mel is with me. I know that like Sam Gamgee, Mel will carry me, even if she can’t carry the ALS.  I’m blessed with a wonderful community, a fellowship, who carries us through the hard times.  But I can’t give this burden to you, I can’t explain the bit by bit of ALS taking control. (I’m really enjoying the “ALS as the One Ring” analogy!  Tolkien wins again!)   Only in this way does any of this make any sense.

I can’t explain it.  I’ll share with you, as you ask me to. image3

2 thoughts on “Forget the stained glass window”

    1. Joe and Mel, you and family are in my thoughts and prayers. I appreciate so much your candor and honesty. Between cancer, dementia and broken bones we’re all carrying heavy burdens. God be with you and your growing family. Remain steadfast in Christ and dream of the Promise Land where everything will be made new and we’ll all be reunited . In the meantime stay positive and strong in your life here on earth as we pray and hope for miracles. God bless, Joe, and thank you for sharing. Warmest regards, Shari Lane


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