Things not to say:
Well, I could get hit by a bus tomorrow.
None of us ever know when we're going to die, do we?
You don't look that sick.
Why don't you exercise more, build up your muscles?
Oh, you can walk? I thought you were sicker.
(said to me) you must feel lucky you don't have to work anymore
Happiness is a choice, so just decide it's going to be a good day.
Ok, ok, I get it. I've been in that position. Unsure what to say. Uncomfortable. Not wanting to be rude.
Especially when it's a disease you aren't sure what it is. Lou Gehrigs. ALS. You know, that ice bucket challenge thing.
I also understand we all haves our challenges, our issues. We can't compare.
Why do I come here and write about our experience? What gives me the right to think our journey is any more special or incredible than anyone else's?
It doesn't, other than it's my blog. I started it the day after Luther was diagnosed. My story is just that. Mine. Luther's.
Writing here helps me sort out the confusion in my head. I'm not always sure who reads this. The tone of this blog has changed over time, as I realized it affected family and friends. I couldn't always blurt out the negative. I needed to share the joys and discoveries.
Its almost four a.m. I haven't slept all night. Not sure why. Nothing overtly angsty clanging around in my brain.
Luther is terminally ill. Will he live a year? Five? We dont know.
The thing is, we mourn these odd losses each week. A constant grieving process. Loss of arms. Now hands. Right leg. Left leg is twitching. Loss of independence. Loss of self.
Sure, you might walk out tomorrow and get hit by a bus. You don't know. But you got up and walked. You didn't spend the last year in a downhill slide from healthy to immobile. You didn't think twice about chewing your food, wondering if you'll choke this time?
People tell me to be happy. Choose my path. Choose happiness. You know what? Some days, it just doesn't feel like a choice. I get to be mad, frustrated, sad. Not at Luther but at the disease. Im allowed to have these feelings we all want to bury and avoid. Fughettaboutit!! I am going to let that SH*T out. In appropriate Minnesota nice ways :)
The reason for writing this stuff is to vent, to get it out, sort through it. But I've also become ~ or am becoming ~ more of a crusader for letting the light in on ALS, what it's like to have this disease and secondly, caregiving.
My.husband struggles every day with every single thing. He has to wait for someone to help him with virtually every thing. Imagine it. How patient would you be??
Each day he is in constant pain. Car rides hurt his bony butt. If I forget to stretch his arms, he doesn't move them for hours at a time. Imagine it.
Coming back to the beginning of this post, I will say I'd rather have folks say something to us than nothing.
Sometimes stuff comes out awkward but its a good learning curve. ALS is a mysterious disease. At times, Luther doesn't "look" sick. He has a great attitude, he doesn't look like Stephen Hawking, so its deceiving. And I think it's good Luther looks good!
Four a.m. - my thoughts are fading.
Luther is sick. He is dying faster than us. There is no cure. No possibility of remission. Each day presents a new sense of loss. He hurts. His self worth is challenged. There are days where his health stays the same but it will not improve. Always waiting for the next change, the proverbial shoe to drop squarely in to our lives.
I'm going to go snuggle in next to him. Maybe that will help me sleep.