The evolution of ALS and socializing…

A glimpse at life with ALS.

Hey folks I have something to share with you as my closest friends; I have ALS…

~What the hell is that?

Well it’s…

~Dude, I’m so sorry, we are here for you. Whatever you need! Let me buy you a drink. This ain’t gonna stop you! We are going to fight like hell!
Hey good to see you, how you been? Thanks for joining us, we wanted to meet somewhere your wheelchair could access. Let me get us a round of drinks.
Hi, how’s it going, been a bit. You’ve modified your home, is it working out for you? We brought a meal. Oh, I’m so glad you’re still able to eat. Yeah we’re doing good, you know busy and all. How’s the new experimental medication working?

It’s not experimental anymore… just new. Won’t know how it’s working for a while.
FB Post: Hey there, sorry we haven’t been by, went on vacation then a huge project at work, you know how it is. Will drop by soon.
FB Post: Great seeing you at the walk! You’ve really gotten good at that eye computer of yours. You looked good.
FB Post: Dude the pics of your trip are amazing. So glad to see you’re not letting ALS slow you down.
Um, hi, I hope you can hear me brother. We are all here…

It’s not anyone’s fault, it is the disease to be honest. Life for all of us continues at the pace our lives require. Friends and even family have a harder time seeing us so vulnerable as our ALS progresses.

In the end we are all just here for each other and that’s all we can do, be present.

If you are a friend of someone dealing with a terminal condition, please visit them. You may just sit in the quiet company of a dear friend. You know what… that’s enough…


It’s Okay to feel the way you do…

(Based on observations of others comments on social media)

ALS takes so much from each of us; those of us living with this disease and our loved ones. At some point, as our eyes are all we have left, they express our desire to be free of this cruelest of afflictions. We each reach this point on our own terms and time. When the time comes our families have to walk the extremely sharp edge of grief and relief, the innate duality that is ALS.

The desire to be present ultimately gives way to the need for rest. It’s not a surrender to ALS. It is in fact our body simply finishing its arduous fight, a fight that took every ounce of our being, every ounce. A battle that our loved ones fought at our side, giving us the strength to endure as long as we do. We must all rest when our time arrives, every single person, regardless of who we are, ALS or not.

Our families don’t ever want us to reach this point, but we do. It’s okay to feel this way; when you feel in your soul that it’s time to rest.

I hope this is not distressing, I only put my thoughts down to help others understand. ALS is a beast, having the strength to endure any of it is a monumental feat. But I (we) and you (loved ones) are so worth the fight!

However you feel, at any point in your journey, that’s OK.