So you have ALS What can you expect…(Part 4)

Alright, so far we have touched on diagnosis, treatment paths and the language of ALS. To be honest we’ve simply dipped our toes into these dark waters. Dark waters that can mimic a warm embrace, not because we can feel comfort in its embrace, but because it numbs us with it’s chokehold.

Oh my you’ve taken a dark turn Me. Juan and Only.

Yes I have, why you may ask? Because ALS is dark, scary, suffocating and ultimately liberating, I will get to that later.

The dark and scary…

“I’m sorry you have ALS”
“There are no treatments or a cure”
This leaves us without hope in the medical establishment. So why engage? Because it, the medical establishment, can and does help us and our families cope with the daily trauma of ALS. Every day we experience anticipatory loss, what next, when? Until what we anticipate loosing in fact is lost.

So what can you expect?
Is ALS painless? Yes, but not its effect on the body and our minds. As it shapes our bodies against our will, it is painful. Strictures, frozen joints, out of control emotions and the pain in our families eyes…but ALS is painless (my ass).

But how will our lives change? That’s what we really want to know?
Change? No it won’t, “change” is not apropos! I will let you choose the word, I have a slew of expletives myself, lol.

ALS will change you though, some changes good, some not. The obvious changes will require you to depend on others for EVERYTHING. These changes will be painful not because your body is at odds with itself, but because you are at odds with yourself. You will however, if you allow it, appreciate time and moments much more. You will also meet amazing souls, many of which are battling ALS themselves. Once again I encourage you to surrender, not to ALS, but to the love and support offered and given. Don’t get me wrong, ALS is a shitty condition. There’s plenty of reminders every day, most are unpleasant, some embarrassing and many simply necessary.

You have two options ultimately; focus on what you lose, or focus on what you still have. To be honest the balance is between both. But it’s perfectly alright to be off balance, trust me your family will pull you back to center, whether you want it or not. You’d be surprised what a slap on the head from your wife will do, ha!

Don’t fight ALS, fight to live, fight for moments, fight for each other!

Let’s sit for a moment before we continue on this journey, catch our breath.
More to come…

The Juan and Only

2 comments

  1. Joanna · January 2

    So useful…so precious that you focus on what is here, what is left, what HOPE looks like. Clearly, science only knows a fraction of….well, anything. Keep hoping, Juan and Only, because of all the things made by God’s hand, there is only ONE YOU. And God don’t make junk!😄 I hope and pray for spontaneous healing for you.

    Thank you for your service to the rest of us.

    Like

    • alstexasdad · January 3

      Thank you, I’m simply trying to share the ALS experience. So little is understood from the patient perspective.
      JR

      Like

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